All About Multiple Sclerosis

More MS news articles for November 2002

Between hope and despair

http://thestar.com.my/health/story.asp?file=/2002/11/24/health/mspersonal&sec=health

Sunday, November 24, 2002
By Paul Yeo

LIVE day to day, you can’t alter fate,
If you’re tired, go to sleep, the daily chores of living;
One thing I know, and I hope you can see;
I’ve got MS, but it’s not having me...

THEY say that in the face of adversity, the human spirit can shine through the endless night, casting light to banish shadows of doubt and uncertainty. Today, I’ve seen the light cast by three women – Wong Pit Tai, who is 52, J.H. who is 54, and Padma Panniker, who is 56.

These ladies come from different backgrounds. Wong is a teacher who still teaches despite the burden of MS; J.H. had to resign from her job as an advertising executive after her diagnosis while Padma manages a business with the help of her family members. They are journeying together on the road few have to brave, one where the destination is not known, but with every road sign depicting two words: multiple sclerosis.

Imagine living with a disease that strikes haphazardly, one day living you blind or paralysed, only for you to recover and wonder when the next attack will be, and if its effects will be permanent. You’re constantly oscillating between two extremes; one minute filled with hope, the next, despair.

As I sit in the warmth of Wong’s home, I’m humbled by the sheer determination that keeps these women fighting, refusing to succumb to the ravages of MS. Padma appears to be in remission; J.H. moves slowly with the help of a walking frame; Wong moves around in a wheelchair.

The support of family has been crucial to all three women; Wong and Padma have their family and children while J.H. has her family, brother, sister and friends to help see her through the tough times.

“I wouldn’t have made it this far without the support of my family,” said Wong, looking at her husband, Tan Seng San, who sits close by her as we conduct this interview. J.H. and Padma nodded in agreement, reflecting on the impact their own loved ones have had on them.

Yes, the love of your family. In Wong’s case, her two older children have been so affected by their mother’s condition that they are now on their way to becoming doctors; one in his fourth year of medical school in Australia while the other is in her third year in Scotland. They are constantly in touch with their parents, sending the latest information about the disease to their father in the hope that it can help with their mother’s condition.

Support is the key word, and all three women agree that the formation of the MS support group last year in September has been a blessing as it could act as a conduit for education and awareness programmes as well as provide emotional support to those living with MS. Padma says: “In the old days, nobody knew that this disease existed. With the support group, we can reach out to all those with MS, and also make the public more aware of this disease.”

J.H. and Padma tell their experiences with MS.

J.H.

One morning, on Feb 17, 1981, while I was driving to work, my vision became blurred. When I reached office, it got worse. I thought it was due to my contact lenses. That evening, with one eye closed, I drove home and managed to arrive safely.

I then told my brother, who is a paediatrician, about my eyesight, and he advised to have it checked out with an eye specialist. The following morning, I spent half the day at the hospital. The doctor told me that my eyesight was fine. I was worried.

Since the eye specialist could not detect any fault with my eyes, he advised me to see a neurologist. The next day, I was admitted for tests and observation. They could not diagnose my condition either. I would feel well one minute, and ill the next.

I was again admitted into the hospital for further tests. This time the doctor carried out a lumbar puncture on the spinal cord. After countless tests, they concluded that I had this incurable disease – multiple sclerosis.

I had never heard of this disease before. My brother explained that it was a condition in which my nerves degenerate. Doctors have not discovered any cure for it. I was totally shattered. I just couldn’t believe it. I could feel the whole world crumbling down – my ambitions, my career, my family, everything.

My condition continued to deteriorate. I lost about 80% of my hearingand my sense of balance. I was again admitted to hospital. Eventually, the left side of my face became numb. I had to use the right side to eat.

On top of that I could feel my head vibrating as if a tractor engine had been switched on. There were occasions when I had to hold my head throughout the night because of the heavy throbbing. Sometimes I had convulsions.

I even lost the ability to speak and pronounce words properly. I was put through all kinds of tests, and by the time I came out of them, I felt like an alien. Since it was such a rare disease in the country, I was even put up for study.

In late April 1981, I was discharged from hospital. Each morning, when I woke up, I expected a miracle. My eyesight remained the same and I was naturally disappointed.

Then something wonderful happened one morning in early May. After my prayers, I moved slowly downstairs for breakfast. All of a sudden, I realised I could see clearly. I was so thrilled and happy. From then onwards it was a process of healing. Eventually, everything was back to normal. On June 13, I reported back to work.

I had annual follow-ups with the doctor. By 1984, he pronounced me medically fit. I was well until 1991. Then I suffered a relapse. My right eye was affected, but I recovered soon after.

From 1992 till 2000, I suffered a few relapses, which mainly affected my hands and legs. This year, my vision was affected. However, I progressed very well with the use of beta interferon.

I have been posed with questions like: “How do feel about what you’ve gone through?”, “Do you feel bitter over what is happening to you?”, “Did you question God about what you’ve gone through?”, etc.

I have thought about it but all I can say is that I’m blessed in the sense that I am still able to move around with the help of the walking frame – at the moment. I was able to travel to Adelaide. I stayed on my own and managed well.

Also, I have to thank my friends who helped me do certain errands and being patient with me. Lastly I have the support of my brother, sister and family.

It has been a long, tough journey, but with faith, courage, love and support, I am determined to live a good life. As today is the beginning of the rest of my life, I promise myself I will start it right....

Padma

I was diagnosed with MS in 1974.

It started with severe pain at the back of my head and double and blurred vision. Within a day or two I was unable to walk steadily. My legs were feeling weak.

My brother-in-law, who is a doctor, told me to consult a neurologist. The doctor admitted me and put me through some tests and prescribed some pain relief tablets. The results did not show anything definite. So he put me on traction, 15 days for the lower back and 15 days from the neck upwards. I was bedridden for 30 days and I suffered a lot.

In those days, traction meant that you had to be flat in bed with the weights hanging for 24 hours.The traction did not help me at all. Then I was referred to a neurosurgeon, who, suspecting that I might be having two tumours, conducted a few other tests, one in the brain and the other in the lower spine.

When the tests were negative, he did a lumbar puncture. But that also did not give satisfying results.

Meanwhile, my right eye was almost blind. He referred me to an ophthalmologist. She could not find anything wrong with my eye. The neurosurgeon decided to give me a medication called adrenocorticotrophic hormone for 10 days through IV. I responded to this treatment, it was a long and slow recovery. That’s when the doctor told me that he suspected MS, which was unheard of in this region but was very common in the West.

In those days we did not have facilities like MRIs, so it took considerable time to diagnose and treat it.

The only thing that kept me going was my faith in God and the will power to live for my husband and three small children. I did not have an extended family to depend on as I am not a Malaysian by birth. I had emigrated here after marriage, and the rest of my family are overseas.

After 1974, I used to get attacks every one-and-a-half to two years. Once when I had the attack, my doctor was away, so I had to see another doctor. I looked quite normal, except that my right vision was almost nil. Since he did not know my history, I had to tell him.

After listening to everything, he thought I had to see a psychiatrist. My God! That was really disheartening. I do not blame the doctor, as those days MS was not very common in Asia. I had to wait another two days for my doctor to come back to get my treatment.

I have gone through quite a number of MRIs and lumbar punctures since. For the past few years I have been getting the attacks more frequently. Last year was a very bad year for me. Although I could walk and looked quite normal, I had double vision, severe spasms and a lot of other problems that were not visible to other people.

It is often said that those who complain they have no shoes will know how lucky they are when they see people with no feet. Needless to say I still count my blessings everyday. With faith and will power, I am determined to live each day to the fullest?.
 

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