15th Dec 2009.
A totally different mask
A few weeks ago, I had lunch with Ronnie Ng (not his real name), a 26 year-old friend whom I recently knew. As we enjoyed the chicken curry rice in the famous Indian restaurant at PJ State, he confided in me that he had a lot of problems. He said, “I have been planning to marry my girlfriend since two years ago. However, our relationship has been badly strained over the past six months. I think we are on the verge of breaking up. One of the reasons why we quarrel is my misleading facial appearance – since I often have difficulty smiling, she thinks that I am constantly angry or unhappy with her, even though deep inside I am not. This masked face of mine is really giving me a lot of trouble.”
Ronnie, who works as a computer specialist, had Parkinson’s since the age of 21. Being a YOPD (Young-onset Parkinson’s) patient, his life journey is totally different from other Parkinson’s patients (most Parkinson’s patients start having the illness after the age of 55).
“By the time they are diagnosed to have Parkinson’s, the majority of the Parkinson’s patients would already have grown-up children and established careers. They are also financially stable and comfortable. In contrast, I have been hit by so many problems which came almost simultaneously ever since I was diagnosed to have Parkinson’s. Recently I almost decided to quit my job. I don’t own any car or house. I don’t have my own family yet. I am having relationship problem. During the early part of this year, I refused to talk to my parents for about four weeks. The whole world seems to be crashing down on me,” lamented Ronnie.
I could easily understand what he was going through. Generally speaking, for any Parkinson’s patients (including the older patients), the first few years are the toughest period throughout their illness. The whole process of learning to accept the illness, understanding the progressive nature of the illness and anticipating the complications, takes a long time. For the YOPD patients, who have not accomplished much in life (e.g. marriage, career, etc), the initial stage of illness is even much more challenging and stressful.
Thus, it was not difficult to understand why halfway through the first clinic consultation a few months ago, he abruptly halted the conversation and stared at the wall. At that moment, I saw tears in his eyes.
When I saw his eyes that day, it reminded me of myself when I was at his age. When I was in my 20’s, I was just like Ronnie – so full of energy, ideas and plans. But what if I had Parkinson’s or any other form of incurable brain disorder when I was in my 20’s? I would certainly be as devastated as he is right now. The truth is, Parkinson’s is something that any young person finds hard to accept.
Parkinson’s had already affected Ronnie ever since he was studying the computer course back in 2003, when he was still unaware of the illness. At that stage, I think he had excessive daytime sleepiness as one of the possible early non-motor symptoms of Parkinson’s. “Even though I slept well at night, somehow I still felt very sleepy during daytime. I just could not understand why. It had never happened to me before. I often fell asleep during the lectures. I was not taking any medications that could cause sleepiness. I was not having symptoms of depression (one of the features of depression is sleepiness) at that stage. The worst thing was that I usually sat at the first row in the lecture hall – my lecturer could easily notice that I was asleep during the lecture. He even sent my parents a letter to inform them that I was not paying enough attention in the lecture hall,” recalled Ronnie.
His sleep disorder was severe enough to affect his studies, to the extent that he failed his computer exams a few times before he finally completed his study in 2004.
Even after he started working, his found his career very challenging. “My colleagues noticed that my left hand was trembling when I had lunch with them. I felt embarrassed as it looked very odd, especially when people stared at my left hand. Once, one of my colleagues even tried to help me to get my food during a buffet lunch – I felt so offended even though I knew that he had good intention. I just don’t like to be helped. As such, I have been avoiding having lunch with my colleagues since then,” said Ronnie.
Ronnie works in a company which provides computer service for many countries. He is required to travel to from one country to another, working in each country for a few months. His work could be very stressful as he had deadlines to meet. When his boss asked him to travel to a foreign country recently, he nearly submitted his resignation because he could not cope with the stress. He gave his boss the excuse that he was having health problem. Fortunately, his boss was considerate enough to find someone else for the assignment.
I told him that his symptoms were not well-controlled. He was just taking Selegiline (5 mg) two tablets a day, which I think was inadequate for him. I advised him to take both Selegiline and Pramipexole (Sifrol). By optimizing his medications, he will have better control of body movement and reduction of hand tremor, making it easier for him to cope with his work.
Another issue that is bothering Ronnie is his personal life. Just like any other young person, he would love to start his own family. In fact, his girlfriend has been asking him to get married soon. However, he is facing a serious dilemma. “Will my girlfriend change her mind and abandon me one day, when I can’t take care of my family anymore? Even if she does not leave me, I am worried that I won’t be able to cope with the guilt of not being able to carry out my responsibility as a husband and father,” explained Ronnie.
I said, “I completely agree with your concern. Why don’t you sit down and have a heart-to-heart talk with her? Explain to her about your illness. If she understands that you are suffering from a progressive illness and is sincere about her love for you, I think she will be happy to be married to you.”
“Somehow, there seems to be a breakdown in communication between both of us. At any moment, we either fight or refuse to talk to each other. I think my girlfriend does not seem to understand what Parkinson’s is all about. I have given her a book on Parkinson’s, but till now she has not bothered to read it,” said Ronnie.
As I talked to him, I found out that his relationship problem was quite complicated. Due to his physical disability, Ronnie had suffered from inferiority complex. He felt intimidated and jealous when he knew that his girlfriend was talking to other guys. Many Parkinson’s patients have problems with self-image and self-esteem, especially the young male patients. When Ronnie’s girlfriend spent a long time with her own friends during weekends, he suspected that she was with another guy. Whenever she worked late, Ronnie often phoned her just to find out “who she was with”. His paranoid behaviour has further strained their relationship.
I suggested to Ronnie that he and his girlfriend go to my clinic so that they can get a lengthy explanation about his illness and the long-term implications, especially on his future family. During such pre-marital counseling, another important matter to discuss is inheritance. “I fully agree with you, doctor. Inheritance is also my main concern, and one of the reasons why I am hesitating to get married. I know that among the younger Parkinson’s patients, genetic plays a more important role compared with the older Parkinson’s patients. The last thing I want to do is to pass the illness to my next generation,” he said.
I suggested to him that I could refer him to a Parkinson’s genetic expert who could do some blood tests to determine the exact nature of genetic abnormality, and also the chances of his children inheriting the illness.
“Despite all these issues concerning marriage, I have to explain to you that I do know some young Parkinson’s patients who are quite happily married because they have understanding and loving life partner. Thus, even though having a spouse who suffers from YOPD is challenging indeed, it does not mean that Parkinson’s is an obstacle for marriage and family life,” I explained.
Nevertheless, till today he has not brought his girlfriend to meet me.
Another disturbing issue is his financial constraint. Ronnie does not earn very much. He does not come from a rich family. He is fully aware of the long-term implications – his future children’s tertiary education. Even though the treatment of Parkinson’s (i.e. medications and brain surgery) is generally expensive, this is not really an important issue anymore as the Ministry of Health has recently provided a lot of financial assistance for Parkinson’s treatment. Insurance is also a headache for Parkinson’s patients. Ronnie has submitted his application for life insurance to several companies, but all of them rejected his application – as he had declared in the insurance forms that he had Parkinson’s.
As such, his “young life” after Parkinson’s has certainly been very stressful. I was not surprised to know that he had a big fight with his parents recently. Out of concern, his parents have bought him some supplements that they thought would help to treat Parkinson’s. But Ronnie was not keen to take those medications because he knew that such supplements have not been proven to be effective in Parkinson’s. When his parents phoned him several times to remind him to take the supplements, he became so irritated and decided not to talk to them for several weeks. “Right now I already have so much stress and many issues to worry about. I know they care for me, but they don’t realize that each time they remind me to take my medications, they just remind me of my illness. I prefer to be left alone and continue living my life without thinking so much about the illness,” revealed Ronnie.
“Nowadays, facing my own parents and siblings is quite stressful. Once, my sister saw my hand trembling while I was working with the computer at home. At that moment, I was too busy till I forgot to take my medications. She immediately informed my mother about what she saw. The next thing that happened was hurtful – my mother reprimanded me for missing a dose of medications. Even during dinners, whenever my mother noticed my hand shaking, she would immediately tell me to take my medications. Sometimes, my parents, especially my mother, would even cry in front of me. All these unpleasant incidents have added to my own sadness. I know that they love me, but I think that they have to be more careful with the way they express their feelings and opinion when I am with them.”
Upon hearing this, I told Ronnie that his family should also meet me one day, so that I can explain to them that they should be more cautious with the way they communicate with Ronnie. They need to understand that Parkinson’s patients are generally sensitive to any remarks made by people around them. However, Ronnie didn’t agree with the idea of bringing his parents to my clinic. “They are already so sad right now. I don’t want them to know too much about the illness because it may make them even more depressed,” replied Ronnie.
Last week, I wrote a referral letter for Ronnie to help him get treatment at a government hospital, where the medications are much more affordable. A few days later, I called him to find out whether he had been able to get the medications. However, he did not take up the phone, despite several calls from me. After that, I decided not to call him anymore. I think that he also did not want me to remind him of his illness, just like his parents did. I am sure that one day, when he is “mentally prepared” to meet me again, he will come back to my clinic.
Actually I do agree with Ronnie’s actions, but only to a certain extent. If we put ourselves in his shoes, we can understand why it is hard for him to arrange for a meeting between me and his family. Perhaps his family (and even Ronnie himself) has not been able to accept the diagnosis, and I fully understand if this is the case. I don’t think there is any young Parkinson’s patient who has no difficulty in accepting the diagnosis.
However, there will be a time when all of them have to face the truth. A meeting with Parkinson’s specialists or doctors is needed to discuss the illness. The Parkinson’s caregivers should not be kept in the dark for too long. Most importantly, the impressive and rapid advances in the treatment of Parkinson’s must be emphasized during this discussion, so that it is easier for the caregivers (and also the Parkinson’s patients) to accept the illness. By giving them an optimistic impression of Parkinson’s, it also helps to allay fear and anxiety.
This is also the place where support groups play an important role – by helping YOPD patients and caregivers accept and cope with the illness.
The story of Ronnie Ng clearly illustrates that YOPD patients are a subset of Parkinson’s which needs special attention and care. They need support from people who really understand their “young” needs and problems. In some other countries, YOPD support groups have been set up to specifically cater for the needs of many young Parkinson’s patients such as Ronnie. Hopefully, one day, we can have a YOPD support group in Malaysia. Despite their life obstacles, there is so much that we can do to help the YOPD community.