Rare Parkinson's Heroes Who Changed the World
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25th Dec 2009.

Tremor in the mind

“After ten years of practicing as a neurologist, I think have finally been “transformed” into a psychiatrist.”

This was what I told a group of doctors while delivering a lecture on Parkinson’s in Ipoh recently. In this lecture, which was entitled “Two Sides of the Same Brain – Motor and Non-motor symptoms of Parkinson’s”, I highlighted the importance of psychiatric disorders in Parkinson’s. Coincidentally, when I was lost in Ipoh General Hospital that day, a pleasant stranger who guided me to the conference room turned out to be a senior psychiatrist who was on his way to attend my lecture.

If you are familiar with the highly dynamic nature of Parkinson’s and its strong association with emotional disorders, you may not be surprised to hear about my “transformation”.

As the physical status of Parkinson’s patients swiftly changes from one hour to another (i.e. “on” and “off” periods), their emotional status swings up and down correspondingly, from depressive to euphoric stage and vice versa. When they are “on”, they feel good. When they “off”, they feel bad and may even cry. On and off, whenever the Parkinson’s patients become anxious, they tremble even more. Whenever they feel calm, somehow their tremor just disappears into thin air. This is exactly why I have always told everyone that Parkinson’s is an illness that affects the body, mind and soul.

It is this close and dynamic relationship between the movement symptoms and emotional disorders in Parkinson’s that made me shift my attention from “the body to the mind and soul”.

In Parkinson’s, the emotional state has a strong influence on the body movement and response to medications. I know a patient with advanced stage Parkinson’s who consistently needs medications about seven times a day. However, when he went to Penang for a holiday with his close friends, but without his wife, he felt well with only three doses of medications per day. Even he himself was surprised by the dramatic improvement in his tremor. This patient was very frank to me – he said he was in a much better mood when his wife was not at his side. He revealed to me that his wife gave him a lot of stress as a result of their personal differences. When he returned from holiday, he needed seven doses of Parkinson’s medications per day, as usual.

I have written a story about a Parkinson’s patient with anxiety disorder whose tremor was “worsened” by levodopa treatment (The “poisonous” medicine in www.lloydtan-trust.com). One of the manifestations of anxiety disorder is unnecessary (and unjustified) worry about various issues (such as the potential side effects of medications), which further intensifies the anxiety disorder. It is well known that any form of anxiety can make the Parkinson’s tremor more serious. Therefore, in that particular patient, the “worsening” of tremor was directly caused by an increased amount of anxiety, rather than the Parkinson’s medications themselves. Just like many Parkinson’s patients, she was very sensitive to any new medications.

In other words, this lady’s tremor was generated in her mind.

In the present article, I describe another three Parkinson’s patients who have their tremor “worsened” by Parkinson’s treatment, in order to emphasize the strong relationship between Parkinson’s and psychiatric disorders. I am certain that this article will also help to allay the anxiety of the caregivers who are alarmed by the “lack of response” of tremor to Parkinson’s medications.

Patient 1

This 67-year-old lady was diagnosed to have mild stroke in July 2009, when she developed sudden onset of slurring of speech and numbness of the left side of the body. A brain scan showed that there was blockage of a blood vessel. While she was warded at the hospital, she developed severe abdominal pain. Despite intensive investigations, the doctors could not identify the underlying cause of the abdominal pain. After being treated with some medications, her abdominal pain subsided, and she was discharged from the hospital. She could walk without assistance at this stage.

In August 2009, she started having tremor of hands and legs. Her body movement gradually became slower. By November 2009, she could hardly walk even with assistance. She told her children that her legs felt weak.

I first saw this lady in December 2009. Her daughter said, “We are puzzled by the fact that she had one problem that led to another. It started with the stroke, and followed by the abdominal pain, and finally the tremor. Can you explain how can she have all these problems within such a short period?”

During her first visit to my clinic, she was sitting on a wheelchair, accompanied by only her daughter. The tremor of Parkinson’s was quite marked, especially on the hands. I tried to help her to walk, but she could not do it at all. As she tried to walk, her hands trembled even more.

Her daughter was surprised when I told her that her mother had Parkinson’s. “Prior to this, my mother has never been diagnosed to have Parkinson’s. However, I can recall that her movement had slowed down over the past three years. In addition, she has been having insomnia for more than five years. She worries a lot about many trivial issues,” replied her daughter.

I explained to her that her mother’s insomnia was due to anxiety disorder which she has been having for many years. The stroke could have aggravated her anxiety disorder, which in turn triggered off the Parkinson’s tremor. The abdominal pain that she experienced when she was hospitalized could also be a manifestation of the underlying anxiety disorder.

Surprisingly, she has never sought treatment for her insomnia (i.e. anxiety disorder) all these years. She said she was not keen to take sedatives or sleeping pills. So I told her that I would prescribe her Madopar first, and if necessary, I would recommend anti-anxiety medications later.

I advised her to start taking Madopar (250) ½ tablet twice a day, and then one tablet twice a day after two weeks. When she was taking ½ tablet, her tremor did improve. However, when the dose of Madopar was increased to one tablet, her tremor was worsened. The exacerbation of tremor tends to occur episodically, during which she also experienced stomach discomfort, difficulty in breathing and dizziness (the typical symptoms of anxiety).

Feeling very disturbed by the worsening of her tremor, her husband and also all three children turned up during the second visit to my clinic. They were puzzled over why her tremor had deteriorated despite the Parkinson’s medication. I spent more than one hour with them that day, explaining every single problem and answering more than 20 questions! I can still remember that by the time this family left my clinic, I was already exhausted and feeling dizzy.

I told them that the worsening of this lady’s tremor was directly related to her anxiety disorder. She must have been worried about this new diagnosis of Parkinson’s and the new medication (Madopar). She already had a stroke. Now she knows that she has Parkinson’s. In total, she has had two different types of brain disorders in a short period. Who wouldn’t be distressed over these matters?

It was during her second visit when her anxiety disorder became more obvious. She was so pre-occupied with her sleep disorder. In fact, within one hour, she told me “I can only sleep from 10 pm to 1 am” at least five times.

Before she left my clinic, I explained to the whole family that 60% of her disability was due to the anxiety disorder, while only 40% of her disability was due to Parkinson’s. I started her on anti-anxiety pills, in addition to the Madopar. After about two weeks, her tremor and anxiety symptoms almost disappeared. She could sleep quite well, for at least six hours per day.

Patient 2

This 44-year-old lady was diagnosed to have Parkinson’s at the age of 41. She used to be a very productive businesswoman, traveling throughout the west coast of Malaysian Peninsula. According to her husband, she was an ambitious and hyperactive person. She used to be quite sociable and got along very well with all her business colleagues.

When she was struck by Parkinson’s, she was devastated. She stopped working and isolated herself from the rest of the world. She had quite severe tremor of hands and head. The tremor became more serious whenever she met other people, including friends and family members. She even avoided walking outside her home as she did not like her neighbours staring at her hands.

She had taken some medications initially, but discontinued all the medications after some time. She said the Parkinson’s medications did not really help to reduce her tremor.

By the time she first met me, she had not been on medications for about two years. When I advised her to start taking medications again, she was initially quite reluctant. At this stage, I realized that she was rejecting the medications as a way to deny the existence of her illness. Her husband said, “I agree with you, doctor. Deep inside, she is still having difficulty accepting her illness. Being quite young, she still wants to live a very active life as she used to. She is not ready to give up on her career and social life. She feels left out, as all her business colleagues are doing well in their career.”

It was obvious that apart from Parkinson’s, she has severe depression and anxiety disorder. She had irritability and insomnia for the past few years. Her husband told me that she had become very sensitive since she was diagnosed to have Parkinson’s. He found it difficult to give her any advice or even make simple remarks as she often said, “It is easier said than done. How can you understand me? You are not a Parkinson’s patient! You don’t feel the pain!”

It took me a long time to persuade her to start her treatment again. I reassured her that she could start her business again if her symptoms were well controlled with medications.

I treated her with a very small dose of Ropinirole (Requip) and Artane (Benzhexol). After about two weeks, she complained to me that her tremor had got worse. I think the Parkinson’s medications reminded her about her illness, and thus aggravated her anxiety disorder and depression.

Subsequently, I had to treat her with anti-depressant and anti-anxiety medications. A few weeks later, she came back to me and complained that she had been vomiting and coughing because of the side effects of medications. When she stopped all her medications, she claimed that the side effects had disappeared.

Knowing that she was still rejecting her illness, I tried to compromise with her. I thought it would be better if I treated her in a more “gentle” manner. I advised her to continue the Ropinirole and stop all other medications.

Over the next few months, her condition remained more or less the same. This was not surprising at all because the dose of Ropinirole was quite small. Furthermore, her depression and anxiety disorder were left untreated.

During her most recent visit, her tremor had got even worse, after a visit to her mother-in-law’s home. She revealed that she had been hurt by her mother-in-law who had said this to her – “How come your hands are still trembling despite spending so much money on your Parkinson’s medications?” As she was so sensitive such comments, I advised her to avoid meeting her relatives for the time being. I also told her that her mother-in-law (or any other relative) did not have any bad intention – they simply did not understand Parkinson’s at all.

I had no choice but to start her on anti-depressant and anti-anxiety medications again. I also explained to her that I may have to refer her to a psychiatrist if her condition does not improve. In the meantime, I advised her to focus on what she can achieve in her life after Parkinson’s rather than why she has Parkinson’s. I am also fully aware that this is easier said than done, but I told her that I would give her all my support.

Currently, I am still monitoring her progress.

Patient 3

This 55-year-old lady has been mentally impaired since childhood. I am not very clear about what really happened to her. What I heard from her sister was that she suffered from infection of the brain during her childhood days.

Ever since her childhood days, she has been having difficulty in communicating with people. She could only express herself using one or two English words.

She lives with a maid in a house which is next to her elder sister’s house. She had the typical tremor of Parkinson’s since she was 52. Somehow, for the past three years, she did not receive any treatment for her Parkinson’s.

When I first met her in my clinic, I concluded that she had Parkinson’s. As far as her diagnosis was concerned, I had no doubt that she had Parkinson’s. Her tremor was quite obvious. Nevertheless, she could still walk on her own.

I treated her with Madopar. By the third week of treatment, her sister informed me that her tremor had worsened.

In view of the impairment in her communication skills, I have to admit that I could not really confirm that she had underlying anxiety disorder. Despite this, I am quite convinced that she had anxiety disorder. As she had never taken any pills in her entire life, she must have wondered why she needed to take the Parkinson’s medication every day. The Parkinson’s medication was definitely something new in her life.

I treated her with anti-anxiety medications but without success. Right now, she is still on Madopar, but at a much lower dose.

Conclusions

Underlying emotional disorder such as anxiety disorder and depression should be considered when a typical Parkinson’s patient does not respond to the usual Parkinson’s treatment, or especially when the tremor worsens despite treatment. Caregivers should also understand that the response to Parkinson’s medications is not always straight-forward. In such “emotional” cases, the caregivers need to be patient and give the doctor (and also the patient) more time to produce the desired result. Moral support and encouragement from caregivers are necessary during this period to help patients overcome their emotional disorder.

With a more “gentle” approach, Parkinson’s patients who have worsening of tremor with Parkinson’s medications do eventually recover, but after a much longer period compared to other straight-forward cases of Parkinson’s.

Most importantly, the doctors and caregivers need to understand the emotional component of Parkinson’s in order to help Parkinson’s patients lead a better life.