Chronicles of a Parkinson’s Fighter
Through my blog, www.heroteo.com, I tell the world how I fight my Parkinson’s. Since being diagnosed with Parkinson’s in September 2005, I refused to allow this illness to put me down. Instead, I set out on a quest of understanding my illness because I wanted to learn how to delay its progression and how to cope with it in my daily life.
With this blog, I hope to help Parkinson’s patients to understand their own illness and let them know that they are not alone in this fight against Parkinson’s. Hopefully, Parkinson’s patients will also join me in this fight to delay their own illness progression and to have a meaningful lifestyle despite having Parkinson’s.
I also hope to send a message to other readers of my blog that there are people suffering from Parkinson’s. There is a serious need for public awareness of the existence of Parkinson’s and how it affects us physically, emotionally and mentally.
Very often, Parkinson’s patients are misdiagnosed or even misunderstood as ageing. Several factors contribute to this – the lack of public awareness, shortage of medical specialists and the age factor of the patients. Parkinson’s involves a significant problem in movement disorders and its early treatment should give relief and mobility to most patients. Hence, it is very unfortunate that Parkinson’s patients are often misdiagnosed and made to suffer unnecessarily. Furthermore, early treatment should slow down the progression of the illness.
There are also patients who remain in a state of denial. They refuse to accept their doctors’ diagnosis that they have Parkinson’s. As a result, they suffer from depression and cause their own illness to deteriorate faster.
I have read somewhere that 2% of the world’s population above the age of 60 years are Parkinson’s patients. Furthermore, every 3 out of 1,000 people aged 50 and above are suffering from Parkinson’s. This number will certainly escalate as the overall population lifespan increases. There is also a growing percentage of younger persons who have Parkinson’s. Therefore, Parkinson’s is increasingly becoming a relevant health issue in the society that requires a greater attention.
With these in mind, I hope that my blog would be a source of education and motivation, as I share my personal experiences on coping with Parkinson’s and my regimental methods to counter/slow down the degenerative effects of the illness. I am positively confidently that Parkinson’s patients with the right treatment and attitude can continue to lead independent and fruitful lives.
How I fought Parkinson’s
I will be turning 70 years old this September. Look at my photographs, taken last year in June 2008. Would you think that I look like a Parkinson’s patient?
As early as 1995, I started to notice changes in my physical stability, walking posture, facial expression, and emotions. I suffered from depression, anxiety, tension, stiff neck and shoulders, rigid right hamstring and calf, constipation, slurred speech, small (micro) handwriting, sleeplessness (insomnia) and blurred vision.
I consulted a physio-therapist to help me with my physical problems. I did tests to check on my bowel movement and was told that I had haemorrhoids.
I complained about my blurred vision to my eye specialist but was told it was normal and should consult a neurologist instead.
I consulted a neurologist to treat my sleeping disorder and did MRI scans on my brain and nervous system but was shown to be normal. The neurologist told me that I was ageing and no medication was given (only the Q10 vitamin). I was even told that I had anxiety and stress from my work.
I consulted general practitioner doctors and was prescribed sleeping pills but I was still not feeling normal.
In 2002, about the time when I retired from my work, a friend told me that I had Parkinson’s symptoms i.e. stooped posture, masked face, slurred speech and hand tremors (slight uncontrollable shaking movements). I had total self denial and anger. Was it true that I had Parkinson’s symptoms? Why did Parkinson’s come to me even though I had been so proactive in taking care of my body? I had been a member of a gym for the past 20 years. I used to spend an hour every day at the gym except Sunday. I had a one-hour morning walk before going to the gym, where I ran on the treadmill, cycled and lifted weights, as part of the gym’s health wellness programme.
As the result, I started to bargain with myself by changing different doctors and my MRI scan results were negative. I was pleased with the results despite still having the symptoms.
In 2005, I joined a gym to learn to improve and stabilise my physical balance and coordination. I took part in body pump classes but was told to do a health check-up because of my tremors and it didn’t seem suitable for me. I took part in body combat classes but I was too slow to respond and follow the movements. I realised that my muscles were weak.
So, I consulted more neurologists. The first one I consulted was in Singapore and the second was in Kuala Lumpur. Both neurologists told me that I was merely showing signs of ageing. Finally, the third one that I consulted in Bangkok (Parkinson’s Specialist) diagnosed that I had Parkinson’s and prescribed me the appropriate medication (Sinemet). It took three neurologists before finally diagnosing my Parkinson’s.
The doctors had difficulty diagnosing because I was still at the early stage of the illness. Parkinson’s is a movement disorder that varies from one patient to another. Therefore it is difficult for doctors to detect, especially for the early-stage Parkinson’s.
A year later, in 2006, I went to see a Parkinson’s Specialist in Kuala Lumpur and it was confirmed that I had Parkinson’s. It was still a shock for me as I was in heavy self denial and filled with anger. I was prescribed with a combination of Sinemet and Requip. My movements improved and stabilised because I had more energy.
After one year of hard work, through a positive attitude and strong support from my family, doctors, physical trainers and friends, my Parkinson’s has slowed down from its progression. In fact, I feel significantly better than before. Many people told me that I don’t even look like a Parkinson’s patient. I am still driving every day and I go overseas frequently for my holidays. My team of doctors have all found me to be an exceptional patient and are very pleased with my progress.
I am very thankful for the wonderful love and support that I have received from my wife and children, without whom, I wouldn’t have made it through these difficult times of struggling with Parkinson’s.
My wife has this to say about me, “I have been married to Teo since 1966 and witnessed his physical and emotional ups and downs due to Parkinson’s, which thankfully, are all now well managed and controlled by his determination and strong will to get better through prayers, exercise and medication.”
My second daughter, Jennifer writes this from a daughter’s perspective:
“My dad is a very brave and determined man. When he was diagnosed with Parkinson’s, he made it his mission to spread awareness to all regarding this illness. It was a relief to him and to us that finally, we know what was wrong with him – his emotional disorders, poor ability to control his movements, etc. were symptoms of Parkinson’s. My dad’s purpose in life now is to ensure that fellow sufferers of Parkinson’s do not go through the same difficult road as him i.e., frustration, depression and emotional distress, caused by misdiagnosis of the illness due to ignorance and lack of understanding. He wants Parkinson’s sufferers to know that the illness can be controlled and managed so as to give one a sustainably good quality of life. Congratulations Dad!!”
And this is another perspective from my third daughter, Janet:
“For a long time, my father has experienced symptoms which many people thought were part of the ageing process. He has experienced loss of smell and loss of taste. He also had difficulty in swallowing food, often causing him to choke. All these caused him to lose his appetite, which led to irregular meals. As a result, he suffered from reflex acid, constipation and weight loss.
Since he was diagnosed with Parkinson’s, the doctor informed him that the above were all part of the symptoms of the illness. It has been a constant struggle and an uphill battle in his effort to delay the onslaught of the illness’ progression. Through his own readings and research, he has experimented with various medications to combat the symptoms. With the help and support of his doctors, things have improved.
With this book, he hopes to share some of his experiences with other fellow Parkinson’s patients, with the hope that it will improve their quality of lives – I am proud of my father and want to tell him - “Well done Dad!”
Key to Fight Parkinson’s
Key to fight Parkinson’s:
1. Knowledge is power
2. Physical exercises
4. Nutrition and supplements
1. Knowledge is power
“Educate your body, educate your self!”
After I have been diagnosed with Parkinson’s, I decided that I had to learn more in order to understand the illness – its causes, symptoms, diagnosis, treatments, medications and their side effects and the importance of proper diets and supplements – to learn how to fight, control and manage the illness. I read books on Parkinson’s and surfed the world wide web for more resources.
I joined the online discussion forum on Parkinson’s managed by the National Parkinson Foundation (NPF), one of the top Parkinson’s support groups in USA. I also joined another online discussion forum called the Parkinson Discussion Forum (PDF). On these forums, I am able to seek advice, second opinion and knowledge from their panel of specialist doctors and exchange knowledge and opinions with other fellow Parkinson’s patients.
I also joined the “PatientsLikeMe” online forum, which is dedicated to an openness policy of compiling and sharing patients’ personal data on healthcare experiences and outcomes. The objective is to speed up the pace of research and fix a broken healthcare system. Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. Besides, by sharing this way, patients can learn from each other about their illnesses and become more knowledgeable in their dialogues with their own doctors.
There is no such discussion forum available in Malaysia. Malaysian Parkinson’s patients should realise that engaging and participating in open and frank discussions about our own illness, without fear, will open up possibilities for us to learn how to fight, control and manage our illness. Therefore, I would strongly encourage fellow Malaysian Parkinson’s patients to join these international discussion forums or even to set up a Malaysian online discussion forum.
Another platform for gaining knowledge about our illness is through participating in the activities of local voluntary support groups. Besides benefiting from the social interaction with other Parkinson’s patients and their caregivers, such exchanges will enhance our understanding of the symptoms, medications, side effects and ways how to control and manage our Parkinson’s illness.
Parkinson’s is a complicated, progressive and chronic illness, therefore, its late (delayed) diagnosis and treatment will develop other illnesses in our bodies. Each of us is responsible for our own illness and should take a serious interest to learn about fighting the illness.
2. Physical exercises
“Be physical, be active, feel better mentally!”
Before I was diagnosed with Parkinson’s 2005, I had already been having both motor and non-motor disorder symptoms. Motor (physical) disorder symptoms were slow and unsteady walking movements, with a stooped posture, masked (stiff) face without smiling, tremors on my right hand and stiffness in my hamstring, shoulders and neck, physical imbalance and lack of coordination, slurred speech, tired eyes with blurred vision, drooling saliva, dry mouth, small (micro) handwriting and difficulty in swallowing. Non-motor (mental) disorder symptoms were depression, anxiety, tension and insomnia.
Motor disorder symptoms weaken our muscles and cause difficulty in coordinating our body movements. Often, Parkinson’s patients have to concentrate hard in order to make a move or coordinate body movements. Though it is not the treatment, physical exercises are necessary to arrest the worsening effects of these symptoms on our muscles and coordination, or even better, to reverse them somewhat.
Besides, physical exercises will bring other benefits to Parkinson’s patients. It is the way to stay healthy, control body weight, stretch the stiff muscles, upright the stooped posture, pump the heart, improve the appetite, better digestion, discharge toxins from the body (through sweating), improve the bowel movement, have a good night’s sleep, be mentally sharp and most importantly, maintain an active lifestyle. Consequently, we become more positive-minded. In other words, physical exercises actually help to improve our mental disorders as well.
Exactly which types and how much physical exercises are appropriate for Parkinson’s patients really depend on the patients’ own strengths and abilities. The gym personal trainers can assess the strengths and abilities of each individual in order to design the best possible programme that fits the individual needs.
Important advice to Parkinson’s patients who are keen to do physical exercises:
• Parkinson’s patients will find that your breathing is too slow to catch up with your body movements during the physical exercises, hence, you will feel tired quickly.
• I have learnt to practise a skill – to loosen up and strengthen the core (body trunk) muscle, which lies roughly between the rib cage and the hips, in the abdomen, lower back and pelvis.
• While doing the exercises, inhale and exhale deeply, with the stomach tucked in and out according to rhythm of breathing.
(i) Don’t feel tired quickly;
(ii) Body posture is upright, so our exercise movements become more powerful, stable, balanced and coordinated - don’t fall down easily.
I decided to join the California Fitness gym in Mid-Valley Mega Mall in Kuala Lumpur, to stretch my muscles that were stiff and rigid, to improve and stabilise my physical balance and coordination. Initially, it was quite frustrating because when I took part in body pump classes, I was told it didn’t seem suitable for me. When I took part in body combat classes, I was too slow to respond and follow the movements.
I didn’t give up despite the initial frustrations. With the persistence of the personal trainers, spinning instructor, yoga instructor, pilates instructor and body balance instructor, combined with taking the appropriate Parkinson’s medications (after being diagnosed with Parkinson’s), I worked hard to regain my muscle strength and balance, exercising almost 3 to 4 hours daily except Sundays.
Our hard work paid off! Not only did the exercises help to upright my body posture, strengthen my muscles, improved my breathing, balancing, stability and flexibility, the exercises also relieved my constipation problem.
The personal trainers who have been with me right from the start until now are Shazerin Nordin and Ungku Zaneatashah. I am so grateful to them. Over the years, we have become friends. They call me Uncle Teo. They were responsible in developing an exercise programme for me. They set me up on a comprehensive programme as follows:
1. Running on the treadmill – to improve body stamina;
2. Working out on the various gym equipment – to improve and condition the muscle strength;
3. Fitball and bosu – to improve body balance;
4. Body weights training – to improve muscle strength, functioning, movement and coordination;
5. Kick-boxing – to improve on coordination, agility, endurance, alertness, balancing and breathing.
Me (at the centre) with my friends (personal trainers),
Ungku Zaneatashah (left) and Shazerin Nordin (right).
Shazerin Nordin, also fondly known as Shah, who is a Kickfit Master Trainer, told me that when he first met me in 2005, he gave himself a challenge to improve my condition. After training me for more than 3 years, he thinks that physically, I am actually 5 years younger than my age of 69 years. He observed that I have improved significantly in the following areas:
1. alertness/reaction time;
Shah, my kick-boxing Master Trainer (right) and me (left).
One example that Shah likes to quote – when I starting training under him, I had a lot of difficulty walking on the treadmill, but now, I can even run on the treadmill!
Shah noted that I go every day to the gym, spend longer time in the gym than other members and make full use of the facilities in California Fitness gym. He also commended me for my interest in getting feedback and opinion from him regarding my progress of gym exercises.
In fact, Shah also told me that he had always quoted me as the good example to other clients, adding that age is not a factor and sickness is not the reason for giving up on a fitness and exercise programme in the gym. By quoting me as the example, Shah hoped to challenge these other clients to do better and improve themselves.
The other personal trainer, Ungku Zane Atashah, also fondly known as Zane, is the Assistant Fitness Manager of California Fitness gym. He told me that when he first met me in 2005, he noticed that my condition was quite bad. I had difficulty even to walk up the stairs to the second level of the gym and struggled with my balancing and coordination. However, he noticed that I have a strong commitment to my exercise programme because I was always punctual and disciplined, with a high level of determination to change my life.
Zane thinks that exercises have helped my mind and body to be well-coordinated. He also holds the view that my commitment to the exercises has made me to become even more disciplined. Thus, both the exercises and commitment were the ingredients to my success in achieving an improved physical fitness.
Another important factor that Zane observed was my willingness to listen to his feedback and advice. I was also constantly seeking for new ideas from other sources and sharing them with Zane and Shah.
Besides working out with the personal trainers, I also participated in spinning (indoor cycling) classes at California Fitness gym, under the guidance of Alex Chin Gim Hin. Alex is a Master Trainer for Spinning, certified by Mad Dogs Athletics. The following is an account of his personal observation and experience with me:
“Spinning is an indoor cycling program which helps participants to improve their strength in the legs and their core (body trunk), build up stamina, gain more energy and improve on body coordination. There are two forms of energy – mental and physical. Mental energy is fueled by our attitude, our thoughts, feelings and emotions. Physical energy is dependent upon training, rest and nutrition. The mind and body are linked and dependent upon each other: the body follows the mind. So, controlling and shifting our mental state, our mental energy, will give us the ability to do things physically that are otherwise impossible. The Spinning program provides the tools, concepts and principles for empowerment. The Spinning class is a combination of movements, strategies and techniques that develops our ability to maximize energy, both physical and mental. The program is usually conducted in a studio, with music as a training partner to provide the motivation to the participants to complete a 50-minute training session. The Spinning Instructor provides guidelines, techniques of riding and heart rate training according to the individual’s goal.
Alex Chin (left) and me.
When Mr. Teo was introduced to me in year 2005, he walked very slowly and had no interaction when talking, but he showed strong interest to attend the cycling class. Then I knew he had a very strong personality. The first time he arrived in the studio, there was no extra conversation other then asking to set up the bike for him and his wife. I started the training at the pace and intensity that he could control, so as to build up the base before the training progressed to a higher intensity (such as strength training and interval training).
At first, his movement on the bike was not coordinated, very rigid in the neck and shoulder and weak in the core (body trunk) muscle. The paddle stroke was not smooth. So I had to put him on a very basic seated flat and seated climb, with more resistance, to build up the aerobic base and his legs’ muscles endurance. I then recommended to him to join pilates and yoga for gain flexibility and core (body trunk) muscles training and Bodypump for a total body strength training. He took my advice and joined those classes. I really respect his determination to overcome the difficulties that he encountered in certain exercises that were more challenging, such as standing position on the bike to perform a running technique. Mr. Teo attended every class without fail.
Spinning together with my instructor, Alex Chin (right).
After attending classes for almost one year, I am really proud to see his improvement in coordination, strength in the legs (he now walks at a faster speed), stability in breathing while riding and a stronger core (body trunk) muscle. He and his wife have become regular participants in our weekend 90-minute challenging class. They have participated in our annual event of 3 hours non-stop marathon ride for the past 2 years. That’s the most encouraging attitude for the other younger members in the club.
I strongly believe that anyone can live a better life if they believe in themselves and make some changes in their lifestyle. We should place our priority on exercises in our life, just like our daily meals. Look at Mr. Teo as the role model – we will be able to live a better life!”
Yoga is helpful to Parkinson’s patients because it is an exercise that stretches the muscles, as well as twisting around our hip bones and seat bones, either standing or seated. Hence, it prevents muscle stiffness and rigidity, increases the mobility of our joints and even uplifts our stooped body posture. As a result, Parkinson’s patients will enjoy a better physical stability and mobility.
Yoga exercises also stimulate deep breathing and relaxation. While this is good for relieving anxiety, stress and depression, it is particularly helpful for Parkinson’s patients who have abnormal breathing rhythm and characteristics. I realised that my abnormal breathing rhythm and characteristics have affected my voice, swallowing and even appetite.
However, Parkinson’s patients must be properly guided by yoga instructors, as some stretching movements may not be suitable for Parkinson’s patients.
I was introduced to yoga in California Fitness gym and decided to engage Foo Jong Hau as my private Yoga Instructor to train me and my wife at home once a week. Foo noted that when we started in 2005, my mobility and coordination was quite restricted. One side of my body was dragging.
Now, my mobility has improved significantly and I don’t even look like a Parkinson’s patient. He observed the following progress in me:
1. Progress in flexibility is more or less the same as any other normal person;
2. Progress in coordination and balancing is taking a much longer time compared to a normal person;
3. My movements have become more stable, though not as stable as a normal person;
4. I can hold the yoga postures for a longer duration, though not as long as a normal person.
Interestingly, Foo noticed that my character and attitude have improved significantly. In the early years, I got frustrated easily; depressed and disappointed whenever I couldn’t do certain moves. However, I am now emotionally more jovial because I can accept that I cannot do certain moves.
In the early years, I was overly-eager to do certain balancing postures and was quite stubborn to succeed in doing them. However, I am now willing to move forward to the next posture even if I couldn’t succeed in doing the previous one.
Me and my wife doing the boat posture together.
Overall, Foo is happy that I have a higher level of commitment compared to other people. I am also very “gung-ho” and motivated to try out difficult moves and postures.
The following are the benefits that I have gained from yoga:
1. Balancing – yoga has helped me to become aware of my body and to make the conscious effort to achieve body coordination and balance;
2. Breathing – yoga’s breathing technique has helped me to calm down and improve my breathing rhythm and characteristics;
3. Flexibility – yoga has brought new levels of flexibility to my body;
4. Strength – yoga’s movements and postures improved my muscle strength;
5. A healing process – the combined effects of regular medication, yoga and gym exercises has helped in my overall healing and fitness, hence slowing down the progression of Parkinson’s.
Foo told me that attitude is my strongest advantage. I have strong determination and patience. These are very rare characteristics, even in normal people, not to mention the Parkinson’s patients. Normally, people would expect fast results but I have the determination and patience to work for more than 3 years, and still going.
In 2005, I underwent the Rolfing Structural Integration therapy by a Certified Rolfer, once a week, in order to stretch and improve my body posture. Rolfing is a hands-on manipulation that works on the connective tissue (fascia) to release, realign and balance the whole body. Rolfing enhances body posture and freedom of movement. It can also resolve pain and discomfort from many different causes.
I stopped at the end one year, after seeing the positive results that I have achieved. My body posture became more upright and my shoulders and jaw were broadened. I felt lighter and my body was more balanced and freed of pain, stiffness and stress. It also relieved my masked face because I could smile again. It was a 10-session course.
Currently, I have regular body massage therapy once a week to relax and enjoy myself. I find that massage helps me to have a better quality of life, as I sleep well, enjoy my daily activities and have less stress.
Medications are very important to Parkinson’s patients. Without medications, we cannot move, do our physical exercises and conduct our daily lives. However, medications bring side effects.
I take the optimal dose of Parkinson’s medications to give me the physical energy and mobility. The dosage and combination of Parkinson’s medications are being adjusted on a regular basis due to the side effects, other symptoms and changes in my body. I consult my Parkinson’s specialist on a regular basis to fine-tune the optimal dosage and combination of medications.
I engage my Parkinson’s specialist in all aspects of my health, including all the motor (physical) disorder and non-motor (mental) disorder symptoms, so that he can advise me on the appropriate team of specialists to manage my health on a comprehensive manner.
I ask a lot of questions in order to learn and understand the cause of the disorders and the effects of the medications. I experiment on myself when taking the medications in order to find out the nature and patterns of the side effects and report accordingly to my Parkinson’s specialist so that my optimal dosage and combination of medications can be fine-tuned.
I participate in the online discussion forums to ask questions and obtain opinions from the doctors regarding my medications and optimal dosage. I also share and exchange knowledge and experiences on the medications and their side effects with other Parkinson’s patients.
Therefore, it is important for Parkinson’s patients to take an active role in working closely together with the doctor to manage the illness with the most suitable optimal dosage and combination of medications. Every Parkinson’s patient is different from the other, hence, the level of optimal dose and types of medications are different.
4. Nutrition and Supplements
A balanced and nutritious diet is important in Parkinson’s because it keeps us healthy, enables our medications to work properly in our body, gives us energy for our movements and builds up our immune system against other illnesses.
However, the motor (physical) and non-motor (mental) complications from Parkinson’s, coupled with the side effects of Parkinson’s medications, often cause most patients to lose their appetite, nausea, eating very slowly for fear of choking and difficulty swallowing.
On the other hand, food containing protein is known to reduce the effectiveness of levodopa, if we take the levodopa medication immediately before, during or after the meal.
Therefore, many Parkinson’s patients are malnourished and lose weight. This increases the risk of other illnesses unrelated to Parkinson’s.
There is no special diet for Parkinson’s. The following are the components of a comprehensive healthy regime that I would recommend to Parkinson’s patients:
1. Eat a balanced diet with all of the daily nutritional requirements.
2. Maintain bone health.
3. Maintain bowel regularity.
4. Adjust nutritional priorities for your situation and stage of illness.
5. Eat lots of fresh fruits and vegetables to provide the fibre that will help or prevent constipation.
6. Drink plenty of fluids during the day to keep hydrated (at least 8 glasses of water each day), which helps to flush impurities through your system and also softens the bowel to prevent constipation.
7. Take your medications before meal times on an empty stomach to avoid conflicts with levodopa medication.
8. For people who have swallowing difficulties, take soft foods.
I believe that a proper diet helps me to slow down my Parkinson’s illness. I consult the dietitian twice a year and take blood tests on the level of nutrients and antioxidants. The dietitian optimises my nutrition level by prescribing supplements.
In order to ensure that my body is nourished properly, I consult a team of practitioners in anti-ageing medicine in Bumrungrad Hospital, Bangkok since 2002. It is believed that Parkinson’s causes oxidative damage on my body. Therefore, I am prescribed a tailor-made nutriceutical programme, consisting of many types of micronutrients and supplements for my daily consumption. I am also prescribed hormone replacement therapy in order to boost my bone mass.
The level of nutrients in our body depends on 3 factors:
1. The amount of nutrients taken from food and supplements;
2. Ability of intestinal absorption;
3. Utilization of nutrients by our body, depending on our level of physical activities. If we do more exercises, we need more nutrients.
In my twice yearly visits, I do blood tests on the level of nutrients and antioxidants in order to assess the amount of vitamins and nutrients required to supplement the level in my body.
I believe that taking supplements is useful for Parkinson’s patients to boost our immune system, and it should form part of the comprehensive treatment for our complicated illness and to slow down its progression. Consult a dietitian to get advice and guidance on what types and level of supplements to be consumed.
The following are some of the more common supplements that I consume, which will be particularly helpful for Parkinson’s patients:
1. Fish oil, which contains omega 3 (the “wonder nutrient”), helps to improve my level of concentration;
2. B vitamins (such as folic acid, vitamins B6 and B12) play a role in the production of certain neurotransmitters, which are important in regulating mood and other brain functions, therefore, they are helpful for treating depression in Parkinson’s.
No matter which religion is your faith, saying a prayer is comforting in times of mental uncertainties. Prayer is a silent moment of contemplation to calm our nerves and to learn to accept our illness.
Prayer gives us hope and motivation to be positive-minded in overcoming the challenges of this complicated illness.
As a Christian, I pray every day to thank God for the abundance that I have received and to renew my vows to focus my energy in the path of God. By this, I mean to focus my energy in living with a positive attitude.
Tips and Pointers on Some Parkinson’s Symptoms
Soft voice, slurred speech and masked face
Parkinson’s patients have difficulty with voice and speech. We have shortness of breath. We don’t speak loud enough. Our speech is almost unintelligible. Our face is expressionless (“poker-face”), so people thought we are not interested or unhappy, even though that is not truly how we feel.
In order to solve these problems, there are ways to improve the muscles around the mouth:
• Use tongue in your mouth to massage the muscles around the mouth.
• Gargle with water full on your throat and blow air through it without swallowing, twist your mouth to the extreme left, right, up and down, to strengthen the facial muscles.
• Blow air deeply into balloon to exercise the muscles around the mouth.
Do it 3 to 4 times a day.
Small (micro) handwriting
As our Parkinson’s progresses, our handwriting becomes smaller and unrecognisable. The bank had trouble recognising my signature on the cheques that I issued. Often, the bank had to call me to verify that I had indeed issued those cheques. Once, I even had to go to the Commissioner for Oaths to authenticate a document that was signed by me.
In order to solve this problem, I have relegated all signing of cheques to my wife.
Unstable walking posture
Due to our weak and stiff muscles, Parkinson’s patients have an unstable walking posture, hence, often resulting in falls, which cause bone fractures or concussions.
I would like to share my experience in discovering that one of the reasons for my unstable walking posture was that both my arms were rigid (not swinging) while walking.
I tried to correct it and make it a habit to swing both arms when walking, in order to give a better balance for my body.
Besides doing arms stretching, walking upright and swinging the arms, I go down to the swimming pool’s shallow end (3 feet depth) in order to immerse my body below the surface of the water and massage my own body muscles for half an hour daily, accompanied by a helper in case I need help.
Make it a habit and you will enjoy a good quality of life.
I have frequent muscle cramps, stiffness, tightness and pain on my hips, thighs, shins, ankles, hamstrings (tendons behind the knees), cheeks, shoulders and neck for the past of 20 years, before I was even diagnosed with Parkinson’s. It comes and goes a few times a day, either when walking, standing or seated.
I used to go for physio-therapy and massage. Now, I realised that the muscle cramps are caused by the disorders in my nervous system, due to the lack of dopamine. Dopamine is a neurotransmitter, a type of chemical that helps messages travel between nerve cells, including our brain cells. Brain cells need dopamine to send messages to other parts of our brain, and to nerve cells and muscles throughout our body. With the lack of dopamine, messages were not transmitted adequately, causing my body muscle movements to be disrupted and not running smoothly. Hence, the muscle cramps developed. Muscle cramps are also caused by reasons other than Parkinson’s.
To solve the problem of frequent muscle cramps, I do the following:
· Take the optimal dosage of Parkinson’s medications to supply the much-needed dopamine to the brain cells.
· Do physical exercises at least 2 hours daily.
· Have a healthy diet.
· Have proper intake of supplementary nutrition.
· Have a body massage once a week to stretch my neck, back, arms and legs up and down, left and right.
· Place a hot/cold pack on the affected muscles to ease the pain from the cramps.
· On my own at home, I also stretch my legs. I place one leg against the wall in order to stretch my leg up and down, front and back, 20 times for each leg. I do this many times daily.
Muscle pains are common in Parkinson’s. I have hamstring (tendon behind my knee) pains and have difficulty standing on my right leg. I find it difficult to do the “tree posture” in yoga, when I have stand on one leg. I am fortunate that I have no problem with the other leg (left).
In order to solve the hamstring pains, I place one leg against the wall in order to stretch my leg up and down, front and back, 20 times for each leg. I do this many times daily.
After stretching, I place hot/cold pack on the hamstring and joints. Besides that, I ensure that I take optimal dosage of medications, have a healthy diet and have proper supplementary nutrition.
Chew a piece of chewing gum or hard candy in the mouth to encourage swallowing. Use sugarless gum or candy so as not to cause tooth decay. It is also helpful to stop drooling and dry mouth. It also maintains a good oral health.
It is cheap and has no side effects.
Parkinson’s does not affect the eyes’ ability to see but there can be some eye-related concerns. Due to the problem of masked (stiff) face in Parkinson’s, there can be a decreased rate of automatic blinking. There could also be a lack of eye coordination due to the motor (physical) disorder symptoms, causing double vision when looking in a certain direction. I have these eye problems. As a result, my eyes feel tired easily and I cannot see clearly when driving at night or during rainy days.
I use eye drops a few times a day and I avoid driving at night or during rainy days.
I suffer from dehydration. It is a side effect of levodopa and the dopamine agonist medications for Parkinson’s. Dehydration is a loss or deficiency of water in our body tissues. This condition may result from inadequate water intake and/or excessive removal of water from the body, i.e. from sweating, vomiting or diarrhoea.
Symptoms include great thirst, nausea and exhaustion. Thirst leads to dehydration. In order to prevent and solve the problem with dehydration, I do the following:
· Drink two litres of water daily, as I am doing strenuous physical exercises daily.
· Apply "Biotane" gel to moisturise my dry lips.
· Chew "Biotane" gum to minimise dryness in my mouth.
· Use "Biotane" mouth wash to minimise rough and sticky tongue.
Anxiety, depression and stress
Due to death of neurons that make dopamine, Parkinson’s have non-motor (mental) disorder symptoms, such as anxiety, depression, tension, stress and insomnia. Side effects of medications could also give rise to these symptoms.
Unknown to most Parkinson’s patients, non-motor disorder symptoms are even more complicated and difficult to treat than the motor (physical) disorder symptoms. It affects the feelings and moods of the Parkinson’s patients and the entire family. I have had my share of mental problems that caused upheavals and tears in my family. You can read the story written by my son-in-law in the inset panel.
This is how I relieve my mental disorders:
· Concentrate on other issues and pastimes that I enjoy or have interests in.
· Indulge in physical exercises, which is very effective for me because:
- I am able to let out the pent-up frustrations and anger inside me;
- I am able to feel totally relaxed, through a deep breathing technique.
· Study the Bible and get involved in the church activities.
· Take medicines at the optimal dosage in order to counter the Parkinson’s symptoms and the effects of emotional disorders.
· Have the attitude that I am not alone and that there is still life after Parkinson’s.
· Giving and serving others will bring more happiness than receiving and being served.
· Participate in online discussion forums with other fellow Parkinson’s patients and medical practitioners, such as PatientsLikeMe, National Parkinson’s Foundation (NPF) and Parkinson’s Discussion Forum (PDF).
The deep breathing technique (to feel relaxed) is achieved from strengthening the core (body trunk) muscle:
• While doing physical exercises, inhale and exhale deeply, with the stomach tucked in and out according to rhythm of breathing.
• The core muscle lies roughly between the rib cage and the hips, in the abdomen, lower back and pelvis. A strong core muscle protects the spine and straightens our body posture. Our exercise movements become more powerful, stable, balanced and coordinated and we will not fall down easily.
In short, we can use the technique above in all exercises in order to deal with our overall health, both mentally and physically, because when we feel relaxed while doing our physical exercises, it becomes more effective and fulfilling. Some examples of exercises which incorporate deep breathing are tai chi, yoga, pilates, running and cycling.
When not doing exercises, we can also do deep breathing, anywhere and at any time:
• Take 5 to 10 deep breaths in and out slowly (to a count of 5 each time), while relaxing your body.
• At the same time, pick one word or phrase (some people call it a “mantra”) to repeat as you breathe in, and again as you breathe out. It helps you to concentrate on your breathing, and distracts you from the stressful situation.
The basic benefit of this type of breathing is, more oxygen gets into your body and will improve your ability to think clearly, thus helping you to cope better with the situation at hand.
Battle of the Inner Demons
by Richard Foo
(my second son-in-law)
I remember that fateful day when my father-in-law, Mr. Teo Kim Hoe, was diagnosed with Parkinson’s at Bumrungrad Hospital in Bangkok, Thailand. My mother-in-law, Mrs. Rosalind Teo, broke the news to us via phone to my wife, Jennifer. I knew that he had been consulting many different doctors at that time, and was doing a lot of medical tests – to find out why he was having difficulty in walking, why he sometimes felt imbalanced, why he had difficulty communicating as he was slurring in his speech, and most important of all, why he was feeling tired and unwell in general. Most of the tests came back negative in the sense that all “readings” or “parameters” were fine. Just call it “old age”?
Deep down in my thoughts, I remember all the symptoms that he was exhibiting were similar to that of my late grandmother, who was diagnosed with Parkinson’s in 1985. I remember her difficulty to walk. I remember her nodding off on the chair for no apparent reason, even though she already had plenty of sleep to rejuvenate herself. And I definitely remember having difficulty trying to make out what she was trying to say. Therefore, when my mother-in-law broke the news of my father-in-law’s diagnosis to my wife, I wasn’t that surprised, although I was still shocked that he had the misfortune of being burdened by the slowly crippling illness.
If my father-in-law’s diagnosis of Parkinson’s was a shock to us, nothing prepared us all for what transpired in the months or years that followed. He exhibited all the physical shortcomings associated with Parkinson’s, which he managed to control brilliantly by taking various exercises and therapies. What we were not prepared for was the marked change in his behaviour, and his mental well-being brought about by Parkinson’s.
After being diagnosed with Parkinson’s, he immediately went into a state of denial, and possibly depression of some stage, trying to come to terms with his new-found illness. He would be moody, self withdrawn and miserable, at the least. You would say this is everybody’s normal reaction to a major situation that would change your life forever. That’s what I thought too. However, my perceptions were quickly quashed when I realised that even after he had come to the stage of acceptance of the illness, his behaviour was still questionable.
We noticed that he would suffer from bouts of “crankiness”. He would be fine for a period of a few weeks, which would be followed suddenly by a bout of “trouble times” for the family. He would suddenly become very easily irritated and very sensitive to issues that would otherwise appear to be normal in everyday circumstances. Owing to his erratic behaviour, he would pick on different members of the family on certain issues, bringing back conflicts that had been settled long ago, and in the process of that, reopening old wounds and memories. This happened periodically and frequently, causing massive unhappiness in the family. And let me tell you, the so-called bouts of upheaval did not occur for a short time. It could last for weeks, with the worst episode so far, lasting 2 months!!!
I remember having a heart-to-heart talk with him during one of the many upheavals. What came out from his mouth was a true revelation to me. He felt depressed. He felt that he could not do a lot of things which every other person, particularly my mother-in-law, could do so easily. He told me he used to be stronger than her and now he had to see her being stronger and fitter than him. He felt his life was wasting away, while others are moving on, leaving him behind. I proposed that he could try to hold his emotions in check and try to concentrate on happy memories. He told me he could not bring himself out of his depressed state of mind. It practically consumed him totally.
In typical fashion belying his fighting spirit and character, his immediate response was a number of trips to the doctors and psychiatrist to clear his mind. They prescribed him with a myriad of medication, ranging from sleeping pills and “tranquillisers” to calm him down and make him sleep. He was definitely not happy with the prescriptions, which in his own words, only made him “sleep and forget about his problems temporarily” or made him “gong” (a hokkien word), namely like a zombie!! My wife actually went through some of the medications and she found out, after some research, that it was utilised for the treatment of patients with Bipolar Syndrome!!!! Now that was a wake up call for us. Was my father-in-law suffering from Bipolar Syndrome as well as Parkinson’s? The answer seemed positive at that time, due to his erratic behaviour. One day he could be an angel, and the next, a bout of upheavals would come by. He was definitely the Dr. Jekyll and Mr. Hyde of the family. We never told him about the drug used for treatment of Bipolar Syndrome, for fear of adding to his mental woes at that time. It was also a good thing because at that time, he must have realised something was amiss because he suddenly stopped feeling sorry for himself, and started doing lots of research, surfing the internet for answers.
He finally found the answer he had been looking for when he called me one day, and produced an article, stating that Parkinson’s patients were prone to emotional disorders, symptoms which include, but not limited to depression, anxiety and apathy. He immediately consulted his doctor, and also posted questions on Parkinson’s online discussion forums, all of them confirming the direct linkage between Parkinson’s and mental/emotional disorder. That was definitely news to me, as I had always thought that Parkinson’s was strictly an illness that impairs your physical movements progressively. I never knew that Parkinson’s patients are mentally “off” as well!! With the benefit of hindsight, I now realised that my late grandmother was very withdrawn, preferring to be silent most of the time. Her silence eventually led to pleas of wanting to “go to heaven”, when she was bedridden. She was definitely suffering from mental anguish as well. But just because she kept it within herself, preferring to suffer in silence, I had missed the link to Parkinson’s. My father-in-law has definitely educated me a lot in his pursuit of understanding Parkinson’s better.
However, his understanding of the link between emotional disorders and Parkinson’s didn’t just stop there. He managed to find out that the drugs prescribed for treatment of Parkinson’s itself, resulted in side effects, which include mental disorders. Worse still, different dosages would bring about different levels of mental anxiety!!! My father-in-law had to do a lot of “mental adjustments” when the dosages of the drugs prescribed were varied from time to time to achieve optimisation of results in the treatment. It came to such a point that my mother-in-law could sense that “your papa definitely has changed the dosage of medicine because he is now having another bout of mood-swing”!!! Let’s say that she has been correct most of the time!!
Since realising that his bouts of mental upheavals were all symptoms of Parkinson’s, he started to control his emotions better. There were markedly less emotional eruptions in the family. He started taking part in activities which he has particular interests in, to weed off the “demons” lurking in his mind. In this case, he indulged in his great love – exercising. He took part in all kinds of strength training and stretching exercises, not only to control and arrest the onset of the physical side of Parkinson’s, but more importantly, to have peace of mind. He feels happy whenever he goes for a workout. I have seen him exercising in the gym, and I can confirm that my father-in-law looks the happiest when he is punching the bean bag in kick-boxing. He looks at peace with himself when meditating in a yoga class. He has also taken time to read and research on the Bible. And most of all, he has poured himself whole-heartedly into helping every Parkinson’s patient understand the illness better, through his blog (www.heroteo.com). He has actively shared his experience with the rest of the world by commenting and writing to the various Parkinson’s online discussion forums, and the response from other Parkinson’s patients have been overwhelming. There is nothing more satisfying for him than to get responses from other Parkinson’s patients on his comments. This is his ultimate passion. I am happy for him that he has finally a found a way to combat his mental demons, by taking part in activities of interests. Of course battling his inner demons in his mind is an on-going process, and he still suffers from bouts of depression and mood-swings now and then, but the frequency has definitely decreased markedly. He has been pretty successful at holding back his mental anguish, which can be a very potent foe in self destruction.
There are two sides to Parkinson’s, one concerning the slow degeneration of the body’s physical movements progressively over time. The other, and in my opinion, the more destructive element, lies in the mental torture suffered by Parkinson’s patients. The advance of the illness in the physical sense can be controlled through the prescription of medically advanced drugs and exercise/therapy. However, one is left to fend for himself when your mental demons come a-calling. Most people will just crumble under mental pressure. My father-in-law has managed, in the face of adversity, to find a way to overcome his troubled state of mind, by concentrating on his interests. What makes it more remarkable here is that, the vehicle he uses to divert his mind from his mental demons is none other than his noble cause to educate Parkinson’s patients, by making them understand Parkinson’s better, so that they can effectively manage the illness better. I am very proud of my father-in-law for his fighting spirit, his courage and most of all, his noble heart!!
Last but not least, my admiration and praises go out for my dear mother-in-law, who had stood by my father-in-law during his darkest months/years when he was plagued with depression and self-pity. Of course, it goes without saying that a Parkinson’s patient suffers greatly when faced with mental turmoil. However, a moment’s ponder here will tell us that the caregiver suffers a lot too. In fact, sometimes even more than the Parkinson’s patient himself. The worst thing that could ever happen to anybody is to see the one she loves waste away in front of her eyes. And on top of that, she has to stand by him and take all the emotional upheavals thrown her way due to the mental stress suffered by the Parkinson’s patient. My mother-in-law has unconditionally stood by my father-in-law and taken care of him, no matter what obstacle was thrown her way. I witnessed her suffering, and all I can say is that she is one incredible woman who has unselfishly shown so much love for my father-in-law in his time of need. I, Jennifer and all the other members of our family, are deeply indebted to you for taking care of Papa so well. You are a diamond in the sky, nothing less than that.
Insomnia (difficulty sleeping) is very common in Parkinson’s. It is caused either by the non-motor (mental) disorder symptoms of Parkinson’s or some other reasons.
I have insomnia on and off in my entire lifetime. It is manifested as difficulty falling asleep, waking up often during the night then having trouble going back to sleep, waking up too early in the morning, feeling tired upon waking up, sleepiness during the day, feeling irritable and having difficulty with concentration and memory.
I used to visit the psychiatrist for treatment but it was not helpful. I recently discovered that my insomnia is caused by the lack of dopamine.
In order to deal with insomnia, I have learnt to cultivate positive thinking and changed my lifestyle by doing physical exercises 2 hours daily and joining online discussion forums, besides taking medications and having a proper diet and supplementary nutrition.
I also do relaxation exercises (deep breathing technique), yoga and pilates to reduce my anxiety, depression and stress, reduce my body tension, relax my muscles and have a restful sleep at night. It takes a very comprehensive approach and discipline but the benefits are interlinked, that is, resolving one problematic symptom is actually helpful in resolving some other problematic symptoms as well.
A New Wave Tsunami
by Albert Lim Tow Sun
(my first son in-law)
Ever since I have known Mr. Teo through his eldest daughter, who is now my beloved wife of almost 17 years, I have always found him to be an ever inquisitive person with an insatiable appetite in debate, as well as in the hungry search of knowledge in the fields that he has been interested in at various times of his life. There were seasons where he would be debating in politics, economics or religion. As to religion, he eventually embraced Christianity, after giving much headache in debate with his eldest daughter, who was the first Christian in his home. Lately, his favourite two subjects would be Exercises, in its various forms, i.e. body combat, pilates and yoga, as well as Parkinson’s.
It is his inherent nature of being inquisitive that has led him thus far to delve more into the subject of Parkinson’s than most other patients, be it in Malaysia or other countries in the world. With the ease of information gathering and sharing through the internet and emails and subsequently through blogging, Mr. Teo has emerged as one of the most outstanding Parkinson’s patients in the world, to have shared his personal experiences openly and frankly, without the shame that many other fellow patients are suffering from, in addition to their Parkinson’s symptoms.
The very fact that he has opened up, has benefited the medical profession in gaining a better understanding of Parkinson’s. It is his hope that Parkinson’s patients around the world would read his blog and be awakened by the fact that Parkinson’s is no longer a taboo subject which has to be put away and hidden, but on the contrary, it has to be opened up so that the medical profession will gain a better understanding and therefore be more equipped in treating the multi-facet issues that come with Parkinson’s.
Mr. Teo hopes that this book, in addition to his blog, will spring a new awareness in Parkinson’s, so that a new wave, a tsunami of knowledge in the subject of this illness, may be triggered to bring about accurate diagnosis and treatment for Parkinson’s patients in the near future.
A Selfless Hero
by Richard Foo
(my second son-in-law)
I was asked by my father-in-law, Mr. Teo Kim Hoe, to contribute an article to a book, dedicated to his struggles and fight against Parkinson’s, a slow and degenerative illness that had plagued him for the past 3 years. I am more than happy to share my thoughts about this amazing person, on his determination and passion to overcome the effects of this illness.
My first encounter with Parkinson’s came in 1985, when my grandmother was diagnosed with it. I remembered how her movements were slowly impaired, how she slowly lost her appetite, how she eventually became bed-ridden, and more importantly, how she finally lost her zest to live her life. My impression of Parkinson’s is that it not only attacks your ability to move, but patients also lose their agility, their sense of balance and their mental state of mind. I soon came to learn that Parkinson’s patients usually feel depressed, preferring to wallow in self-pity. Apathy is also a trademark of Parkinson’s patients. They will generally refuse the medication and treatment offered. That was my general view and understanding of Parkinson’s patients…until my father-in-law came along.
Right from the moment that he was diagnosed with the illness, he took all the relevant issues by the horns and dealt with them with vigour. Rather than wallowing in self-pity, he launched himself into research on all aspects of the illness. He not only sought advice and opinions from his doctors, but also surfed the internet for articles and write-ups on Parkinson’s.
Over a short span of time, I am proud to say, that he has amassed quite a comprehensive understanding of the nature of the illness, and its effects on a person’s mind and body. Not satisfied with only the knowledge gained in respect of the illness and its effects, he even went further to research on the different medications prescribed for Parkinson’s patients, and the side effects that such medications bring upon to the patients. Whenever he felt uncomfortable or “different”, he would immediately ask for his doctor’s advice, and thereafter, follow up with a slew of research on the internet. Suffice for me to say that most of the time, he could link the side effects to the medications that he had taken. Armed with such knowledge, he would normally request for another medication to counter the side effect, if available. He took me aside one day, and told me that certain medication caused the patient to suffer from low blood pressure, particularly when the patient had been sitting down for quite some time. He requested for, and obtained medication to increase his blood pressure, to offset the effect of fainting spells caused by the low blood pressure. Here is one person who is not only interested in overcoming the illness, but also in improving the quality of life while coping with the medication for Parkinson’s.
If his efforts in acquiring knowledge of the illness and its medications are astounding, what he does on the physical side is nothing short of unbelievable. My father-in-law took up a strict fitness regime to arrest the advance of his movement disorder, brought about by the illness. His passion and determination are astounding, as he puts in approximately 2 to 3 hours of physical activity daily, for six days in a week, under the supervision of professional trainers. His exercise regime not only consists of cardio activities like running/jogging on the treadmill and riding the bicycle, but also includes stretching and balancing exercises like yoga and pilates, and strength training exercises. Apart from his strict exercise regime, he will sometimes join group exercise classes for fun. He does kick boxing classes and also spinning classes (a cardio class, based on the use of a racing bicycle).
As a result of his efforts, he definitely appears to have no signs of the movement impeding illness that he is suffering from. I am also very active in the gym, and I attend group exercise classes (with some very strenuous movements) very frequently. I have exercised with him before, and every one of my friends at the gym could not believe that he is reaching 70 years old, let alone, a Parkinson’s patient. How many 70-year olds out there will actively take part in a kick boxing class? Not to mention one who has been diagnosed with Parkinson’s? I think not many. Not even those who are younger than him. He has been doing his exercises faithfully for the past 3 years, since the day that he was diagnosed with the illness, and there is no sign of him slowing down at all. All these need strong effort and determination. It doesn’t come easy at all. Credit must definitely be given to him for being able to fight the general feeling of apathy normally associated with Parkinson’s patients, and launch himself into physical activity, to his own benefit.
The energy of this man doesn’t just stop there. I think the most amazing thing demonstrated by my father-in-law, is his passion, and his sincere heart, in sharing his experiences with other people. He wants people who are in the same predicament as him to be aware of the illness and how it affects their bodies, their movements, their state of mind, the medications involved, the various side effects that come together with these medications, and most of all, how to fight and arrest the advancement of the illness. His greatest gift to the public is his blog, “Chronicles of a Parkinson’s Fighter”. You can access his blog at www.heroteo.com. He writes about his experience as a “fighter” of the illness, and gives a very detailed description about its symptoms, the causes, the medications involved and all other aspects of the illness. He also provides links to useful sites related to the illness, and all the articles that he had researched on. This goes to show how selfless this man is, as far as educating the public on Parkinson’s is concerned. I am sure the public can benefit from his blog, where a greater understanding can be achieved on Parkinson’s.
My father-in-law is definitely not your so called run-of-the-mill patient diagnosed with Parkinson’s. In fact he doesn’t even look like a Parkinson’s patient at all. His glow and zest for life is attributed to his determination and passion, not only in overcoming the illness, but also in educating the public, particularly those who are in the same predicament as him, on all aspects of the illness. I think this is very noble of him. It shows how selfless he is in his “quest” to increase the awareness of the public on the illness. And if anybody thinks that he is just a flash in the pan, and his interests will wane over the years, think twice. Unlike a lot of cases of waning interests, or as what the popular Malay phrase goes, “Hangat-hangat tahi ayam,” my father-in-law’s interest in this illness certainly seems to be growing by the day. Continue with your good work, Daddy. I am soooooooo proud of you!!!
by SC Chua
(my third son-in-law)
Mr. Teo Kim Hoe was diagnosed with Parkinson’s in September 2005. At a time when most people would sit back and enjoy their retirement lives, Mr. Teo was suddenly faced with a life altering disease. But such is life. When the worst of the storm hits and hurls your ship towards a pile of rocks, you either give up and jump from the ship or you summon your courage to do your best to steer the ship away from danger and say, “Is this the best that you can do?” In coping with this degenerative illness, Mr. Teo is the epitome of Captain Courageous, hence the appropriate nickname he adopted in his blog – Hero Teo.
Although his blog is not exactly Michael J. Fox’s Foundation for Parkinson’s, but this blog is an amazing record of the extraordinary efforts that Mr. Teo has taken to combat this illness and his desire to share his knowledge with the world in the hope of reaching out to fellow Parkinson’s patients with the intention of helping them to the best that he can.
While many would stop after knowing what are the most appropriate or latest medicines available for Parkinson’s and finding out the best procedures out there, Mr. Teo would not sit on his laurels until he finds out for himself the truthfulness of the representations concerning those medicines and procedures. This often involved using himself as the test subject and facing the consequences of the undesired side effects, all these just to prove the effectiveness of the medicines. He would then share all these experiences in his blog for the benefit of others. Captain Courageous? I have no doubt that he is.
If all his work and research would benefit and improve the life of even just one person, then Mr. Teo has achieved more than what many of us could do in a lifetime.
Parkinson’s and Nutrition
by Dr. Kridakorn Kesorncam
American Board of Anti-Aging Medicine
Bumrungrad Hospital, Bangkok
It was 3 years ago when I first met with Mr. Teo and he was not looking very well. I can’t blame him because he was diagnosed with Parkinson’s. Parkinson’s is a progressive movement disorder which progresses until there is significant loss of mobility and impaired activities in daily living. We know Parkinson’s is an incurable illness but evidence of the related cause is becoming clearer. The role of toxicity, free radical damage, chronic inflammation and mitochondrial dysfunction have been present in Parkinson’s. We are exposed to a large variety of toxins, including heavy metal toxins via our food and environmental contamination. Naturally, we have a complex enzyme system in our liver to detoxify these substances, but this system varies from individual to individual depending upon genetics, lifestyle and the environment. There is a general consensus that the ability to detoxify and eliminate these substances affect the onset and course of Parkinson’s. A diminished ability for the liver to remove neurotoxins such as pesticides, could increase the risk of Parkinson’s. Milkthistle and turmeric are the liver supportive herbs that help reduce any toxicity contributing to the progression of the illness. Parkinson’s patients should strengthen their bodies’ detoxification abilities with high potency vitamin/mineral supplements.
Oxidation is the deterioration process of tissue caused by free radicals. It occurs with exposure to environmental toxins and metabolism of xenobiotic chemicals. The body has an antioxidant molecule system to contain these activities. Of interest is that the metabolism of dopamine itself creates free radicals and it also appears that environmental neurotoxins ultimately act via oxidative stress. The evidence for oxidative damage in Parkinson’s recommends the use of antioxidants. Some studies show high doses of vitamin C and E can increase the time until when levodopa is needed. Glutathione, one of the intracellular and powerful antioxidant, is deficient in Parkinson’s patients and the magnitude of reduction parallels the severity of the illness. We can increase glutathione level via taking N-acetyl cysteine orally or intravenous glutathione infusion.
Mitochondria is power house of cell that extracts energy from food. Parkinson’s patients have significant reduction of mitochondria function. There are a number of studies that showed CoQ10 supplement helps to improve mitochondria function, increase mitochondria energy production and protect brain cells from neurotoxic agent.
There is evidence that inflammation plays a significant role in Parkinson’s. Some nutrients that inhibit the inflammatory process should be part of the supplemental protocol. Turmeric or curcumin may be the best and safest anti-inflammatory to be added to the supplemental regimen. Omega-3 fatty acid, EPA and DHA, which are found in fish oil, can reduce inflammation. It is established that sugar intake increases the inflammatory process. Parkinson’s patients should be well advised to avoid simple sugars such as that can found in most candy, sodas and many sweet foods.
I have had the opportunity to work with Mr. Teo as one of the many doctors that he consults with, in his comprehensive approach to find a better way to treat Parkinson’s.
From our knowledge of Parkinson’s, we tested Mr. Teo, measured his free radical, antioxidant, vitamin, mineral levels and improved his antioxidant status through a tailor-made nutriceutical program. We worked with hormone replacement to boost his internal systems. We monitored other blood biochemistry profile such as blood sugar and lipid profile as well, and we found that he has slightly high blood sugar and cholesterol. We advised him about how to improve his antioxidant status and to reduce his blood sugar and cholesterol. We developed a comprehensive treatment program to support and improve the quality of life and to slow down the damaging process of Parkinson’s in his body.
Mr. Teo is a fighter. He has taken our recommendation into his lifestyle. Mr. Teo also exercises regularly and practices yoga. We do follow-up tests every 6 months to monitor his free radical, antioxidant and nutrient levels. We adjust the dose of supplements, since the body function undergoes dynamic change.
His general health has improved – he has more energy, better memory and more controlled muscle movements. Also, he look active and healthier. Finally his blood sugar and cholesterol have lowered to normal. His bone mineral density has increased.
I believe that this comprehensive approach has helped him to greatly improve his body balance. Another important part of his success, I believe, comes from Ms. Lee – his wife. Few people are blessed with such an exceptionally supportive life partner.
What I am most impressed with, even more so than his results – is Mr. Teo himself. He is eager to learn and ready to share the information and experiences that he uncovers. I would like to encourage all Parkinson’s patients to visit his blog, www.heroteo.com.
It is an honor to be part of his doctor team.
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My witness of a PD victim
by Rev. Bobby Lam
Pastor, Kuala Lumpur Baptist Church (KLBC)
My knowledge of Parkinson’s broadened when I was involved in a Parkinson’s awareness Sunday at KLBC some seven years ago, when we were collecting an offering to support the Parkinson’s association organised by Dato’ Setia J. P. Tan. He was a member of our church and was passionate to help those who were suffering from this ageing disorder. This whole subject of Parkinson’s was set aside until I met Mr. Teo Kim Hoe, who bravely confessed to me that the doctor had diagnosed him to be suffering from Parkinson’s. I was surprised that he had the courage to openly confess that he was a victim of Parkinson’s. From my knowledge, most people who suffer from this illness do not want to admit that they have Parkinson’s for fear of rejection or discrimination. A lot of patients who suffer from this illness choose the path of denial rather than open confrontation with their illness. But this was not so with Mr. Teo as he took his predicament very calmly. Actually as I look back, I noticed some obvious signs and symptoms of Parkinson’s in his speech and movement over the past three years. But as usual, I did not bring out the subject until it was confirmed. After all, I am not an expert in this field and it was best left to the doctors or specialists to make their professional diagnosis.
I would like to share some of my personal observations of Mr. Teo, a victim of Parkinson’s, on how he faces the new challenge that lies ahead of him when he was diagnosed as a Parkinson’s victim. Over the past two years, I have seen the improvement in his illness as well as the effectiveness of some of the steps that he had taken to arrest the illness. First of all, I must say that Mr. Teo is a fighter within, as he does not give in to obstacles easily when they come his way. Instead of sitting down and mourning over his predicament, he took positive and aggressive actions to deal with the illness. He not only sought doctors’ advice and second opinions on his illness, he also ventured into the internet to search for information, in order to have a better understanding of the illness that inflicted him. The vast amount of information and knowledge acquired from the internet helped him to deal with his illness comprehensively and calmly. He did a lot of research on the internet that he constantly shared with me over the e-mail. I was amazed by how much knowledge he had acquired over a short period of time as he shared them with others who suffered the same predicament.
Besides getting to know the illness more comprehensively, he also took up physical exercises to arrest and slow down the movement disorder from which he was suffering. He visits the gym on a regular basis to exercise his muscles that are slowing down. It takes discipline and determination to do that. I was invited to join him on one occasion and I witnessed the passion and determination that he put into his physical exercises, and that really put me to shame. I would say that not many people his age would have taken up that challenge, considering the fact that he is a Parkinson’s victim. I admire his optimism and fighting spirit.
Besides his faith in God, he is a man of action as well. He would not sit down and let his predicament take over. It is not fair to say that Mr. Teo single-handedly took up the challenge to fight the illness by himself. Like all other patients, there are those who walk the rough path side by side with them, so that the path would be easier to walk. Besides God, that one person is his other half – Mrs. Teo. She is a strong and supportive partner of Mr. Teo. She is there to encourage Kim Hoe to take on the challenge courageously and to remind him that he is not alone – “in sickness and in health.” As a pastor, I have witnessed many patients who lost the battle, not because there are no better medication or treatment but because of the lack of support from friends and family members. For the patient to survive, a strong support from the spouse or family members often gives the patient a push forward. In the midst of his battle against Parkinson’s, he found meaning and purpose in his struggle.
I lifted my hat to him when he told me that he had started a blog on the subject of Parkinson’s. Now he is connecting with others who are in the same predicament – fellow Parkinson’s victims. He interacts and shares all the information and his personal experiences with those who are traveling on the same path. He will be publishing his first book on Parkinson’s with the intention of raising awareness of this illness so that others who are diagnosed can take necessary and early actions to deal with it.
There is no cure for Parkinson’s but there are some positive steps to arrest the illness. I believe he is living his life to the fullest and is making the best of his time to help others as well. He is a positive model for those who feel that life with Parkinson’s is hopeless and he has proven them wrong. There is plenty to live for if we look from a different angle. Last but not the least, I wish Mr. Teo the best as he crusades for the cause of Parkinson’s.
by Rev. John Kok
Pastor, Kuala Lumpur Baptist Church
I have known Mr. Teo Kim Hoe for almost 18 years. He started attending the Kuala Lumpur Baptist Church with his family at the time I was appointed as the Pastor-in-charge of the Church in 1989. He, together with his wife, were baptised in our church on April 11, 1993. They were faithful and God’s loving members of the church. They even opened their house for a Care Group to meet and I was the leader of that group. Even now, though I am no longer the leader of their Care Group, his house is still open for the Care Group to meet once a week.
I know Mr. Teo very well as we share, talk and have many meals together. He has a strong faith in God and is a very optimistic person, which came in handy when in his later years, he was diagnosed as having Parkinson’s. He did not allow it to affect him personally or in his service to God. He began to do his own study and discovery about Parkinson’s. Later, he was encouraged by his doctor to start his own blog to share his own experiences on how he fought his illness. Oftentimes, he would forward to me his articles to read and also to pray for him.
Just a few months back I received a call from his wife informing me that he had a minor stroke and was admitted to the hospital. My wife and I rushed to the hospital to visit him and was surprised that he could still be in his jovial self to talk about his condition and his excitement about writing his book on Parkinson’s to encourage other fellow patients. He never stopped talking despite us and his family telling him to stop and to rest. We prayed for him and all his Care Group members also prayed for him when they heard that he was admitted to the hospital. God is good. He heard our prayers and Mr. Teo was discharged from the hospital the next day. It was a miracle and even his doctor said it was a miracle that he could recover so fast.
Today Mr. Teo is still driving around town and is still the optimistic and confident person that I knew when he first came to the church. I pray that his book will be an encouragement to all who read it on how God can use someone like him without any medical knowledge of Parkinson’s to be a blessing to many.