I've Got a Life to Live

Diagnosed at 34

When I was 7 months pregnant with my third child, I started to notice some difficulty writing. The letters were crowded and small, and my fingers felt weak. My first thoughts were, “Was this pregnancy related? Maybe water retention was making my fingers stiff?” “Was it carpal tunnel syndrome?” After all, I had been a data enterer for the past six years. Being a full-time working mom of two young boys, I put this symptom on the back burner and concentrated on my busy life.
After my daughter was born, I went back to work and immediately became aware of the writing problem. I notified my boss who made arrangements for me to see a workers compensation doctor affiliated with my employer. After weeks of exams and physical therapy, there was no improvement. Over the next several months I continued to seek out answers. I consulted neurologists, rheumatologists, internal medicine specialists, and started a physical therapy program. My symptoms now included nerve and muscle pain in my wrists, elbow and shoulder on my right side. I was told I had everything from tendonitis to lupus. My neurologist at the time agreed to put me on temporary disability from my job while I tried to get an answer that made sense.
Finally one doctor suggested I make an appointment with the neurology department at UCLA for a consultation. After two and a half years of frustration, I was diagnosed in less than 15 minutes with early onset Parkinson’s disease. I had an answer, but what did this all mean? I drove home in tears wondering how I was going to break the news to my husband and mother.
Now looking back, 8 years later, I am in a much different place. After going through bouts of depression, experimenting with a variety of prescription drugs, and struggling with destructive side effects, I’ve connected with other PD patients, and have learned to live with something I have little control over. What I do have control over is my attitude and outlook. There are many things I can still do, although maybe in a different way. It’s still difficult to button a shirt, brush my teeth or keep up with my kids, but it’s not impossible. It would be easy to curl up in a ball and feel sorry for myself but that would be giving up. I’m a mom, a daughter, a sister, and a friend, and there are people who love me and depend on me. I've got a life to live.

About Parkinson's Disease

Parkinson’s disease is a chronic, progressive neurological disease. It belongs to a group of conditions called motor system disorders, which are the result of the loss of dopamine-producing brain cells. Dopamine, a neurochemical that controls communication between brain cells, is responsible for control of motor function. Nearly 80 percent of the dopamine producing cells in the brain die before the motor symptoms of Parkinson’s disease even appear. The four primary symptoms of Parkinson’s disease are tremor, or trembling in hands, arms, legs, jaw, and face; rigidity, or stiffness of the limbs and trunk; bradykinesia, or slowness of movement; and postural instability, or impaired balance and coordination. Other symptoms may include cognitive changes; difficulty in swallowing, chewing, and speaking; urinary problems or constipation; skin problems; and sleep disruptions. As these symptoms become more pronounced, patients may have difficulty walking, talking, or completing other simple tasks. Early symptoms of Parkinson’s are subtle and occur gradually. In some people the disease progresses more quickly than in others.

Currently there is no cure, therapy, or drug to slow or halt the progression of Parkinson’s disease. While medication masks some symptoms for a limited period, generally four to eight years, dose-limiting side-effects do occur after time. Eventually the medications lose their effectiveness, leaving the person unable to move, speak or swallow.

In 1817, a British scientist named James Parkinson first described “the shaking palsy” in an essay. It was through this essay that he defined what we know as Parkinson’s disease today: “involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forwards, and to pass from a walking to a running pace: the senses and intellects being uninjured.”

It is unknown exactly how many Americans live with Parkinson’s disease, but most estimates range from 500,000 to 1.5 million. It is believed that nearly 60,000 people are diagnosed each year in the U.S. with Parkinson’s. The average age of diagnosis for Parkinson’s disease is 60 years old, but people as young as 18 have been diagnosed. Typically, anyone diagnosed under the age of 50 is considered as having young-onset Parkinson’s disease.

The cause of Parkinson’s disease remains unknown, but scientists and researchers believe there to be both genetic and environmental factors. In October 2003, scientists at NIH discovered that too much of the alpha-synuclein gene may cause Parkinson’s disease. More recently, scientists at the University of California at Los Angeles discovered that some pesticides used on plants and crops that end up in well water are linked to an increased risk of Parkinson’s disease. The environmental and genetic links to Parkinson’s disease are diverse, but the science continues to progress.

In order to establish better numbers and understanding about people with Parkinson’s, Congress has taken up a bill, H.R. 2595/S. 425, the National Neurological Diseases Surveillance System Act, that will create national, coordinated registries for both Parkinson’s disease and all neurological disorders. When the registry is implemented, we will learn important information about Parkinson’s disease such as geographic prevalence, disease clusters, and the number of Americans living with Parkinson’s disease.

PAN continues to fight for better treatments and a cure for Parkinson’s disease. Click here to learn more about PAN’s legislative priorities for the Parkinson’s disease community.

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My mother was my hero in so many ways! She accepted and dealt with Parkinson’s disease with dignity and humor. She never complained about what she couldn’t do, but was grateful for what

The words “you have Parkinson’s” have changed your life. For some of you, it is fresh, raw and startling news—often poorly told. Others may have grown more accustomed over the years. Some of you have loving support of friends and family. Others may feel very alone. For everyone who hears those words, life is forever changed.

Parkinson’s is an extremely individual syndrome. And you have a great deal of power to decide how your life will unfold. Yes, it is still possible to live your best life

parkinson disease

About Parkinson's Disease

Parkinson’s disease is a chronic, progressive neurological disease. It belongs to a group of conditions called motor system disorders, which are the result of the loss of dopamine-producing brain cells. Dopamine, a neurochemical that controls communication between brain cells, is responsible for control of motor function. Nearly 80 percent of the dopamine producing cells in the brain die before the motor symptoms of Parkinson’s disease even appear. The four primary symptoms of Parkinson’s disease are tremor, or trembling in hands, arms, legs, jaw, and face; rigidity, or stiffness of the limbs and trunk; bradykinesia, or slowness of movement; and postural instability, or impaired balance and coordination. Other symptoms may include cognitive changes; difficulty in swallowing, chewing, and speaking; urinary problems or constipation; skin problems; and sleep disruptions. As these symptoms become more pronounced, patients may have difficulty walking, talking, or completing other simple tasks. Early symptoms of Parkinson’s are subtle and occur gradually. In some people the disease progresses more quickly than in others.

Currently there is no cure, therapy, or drug to slow or halt the progression of Parkinson’s disease. While medication masks some symptoms for a limited period, generally four to eight years, dose-limiting side-effects do occur after time. Eventually the medications lose their effectiveness, leaving the person unable to move, speak or swallow.

In 1817, a British scientist named James Parkinson first described “the shaking palsy” in an essay. It was through this essay that he defined what we know as Parkinson’s disease today: “involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forwards, and to pass from a walking to a running pace: the senses and intellects being uninjured.”

It is unknown exactly how many Americans live with Parkinson’s disease, but most estimates range from 500,000 to 1.5 million. It is believed that nearly 60,000 people are diagnosed each year in the U.S. with Parkinson’s. The average age of diagnosis for Parkinson’s disease is 60 years old, but people as young as 18 have been diagnosed. Typically, anyone diagnosed under the age of 50 is considered as having young-onset Parkinson’s disease.

The cause of Parkinson’s disease remains unknown, but scientists and researchers believe there to be both genetic and environmental factors. In October 2003, scientists at NIH discovered that too much of the alpha-synuclein gene may cause Parkinson’s disease. More recently, scientists at the University of California at Los Angeles discovered that some pesticides used on plants and crops that end up in well water are linked to an increased risk of Parkinson’s disease. The environmental and genetic links to Parkinson’s disease are diverse, but the science continues to progress.

In order to establish better numbers and understanding about people with Parkinson’s, Congress has taken up a bill, H.R. 2595/S. 425, the National Neurological Diseases Surveillance System Act, that will create national, coordinated registries for both Parkinson’s disease and all neurological disorders. When the registry is implemented, we will learn important information about Parkinson’s disease such as geographic prevalence, disease clusters, and the number of Americans living with Parkinson’s disease.

PAN continues to fight for better treatments and a cure for Parkinson’s disease. Click here to learn more about PAN’s legislative priorities for the Parkinson’s disease community.

secret recipe behind the mAK

Secret recipe behind the mask

Hero Teo
Kuala Lumpur, Malaysia

http://www.youtube.com/watch?v=sTpu_zBvDME
I often smiled when I watched the video recording of my kick-boxing exercise which I uploaded to You Tube. My trainers and videographer told me the same thing – “You do not look like a Parkinson’s patient at all”. Even my doctor shook his head in disbelief and said, “This is shocking. I can’t imagine a 70-year-old Parkinson’s patient doing a very strenuous exercise such as kickboxing. I am sure that you are the only Parkinson’s patient in Malaysia who is doing the kickboxing exercise.”
As early as 1998, I already had both the motor and non-motor symptoms. Since my diagnosis in 2002, I went through a period of depression, anxiety, denial and anger. Subsequently, I bounced back after discovering a secret recipe for fighting Parkinson’s, which consisted of: knowledge (is power), exercise, medications, nutrition / supplements and prayer. In my quest for knowledge, I surfed various Parkinson’s websites, raining them with questions, questions and questions. I even started the first Parkinson’s blog in Malaysia (www.heroteo.com). I tried to learn everything about Parkinson’s in order to overcome all complications - the Chinese heroes won the battles by understanding their enemy first.
Animal experiments showed that exercise may be neuroprotective. Rats which were forced to exercise had a lesser degree of brain damage after they were exposed to poison. In mice which were made to undergo treadmill exercise, there was increased production of dopamine.
Parkinson’s patients are comparable to the car. The medications are needed to help patients to start walking, while fuel or battery is needed to help start the car engine. Exercise is needed to improve the patients’ physical mobility and endurance, while driving helps to recharge the battery. Thus, exercise helps our “engines” warm up before leaving home and keep the “cars” going everyday. Even healthy people such as Bruce Lee, the Chinese Kung Fu master, know that exercise is beneficial.
As such, since 2005, I decided to “get physical”. I spend 3-4 hours everyday at the California Fitness gym, doing a wide range of “heavy” exercise such as kick-boxing, weight-training and spinning (indoor cycling). Twice a week, I do yoga exercise at home with the guidance of a trainer.
Since this year, my physical condition has drastically improved. I sleep and eat well (I eat to live, and live to eat). I enjoy driving around the Kuala Lumpur city with my wife everyday and going overseas for holiday. I managed to reduce the daily dose of Parkinson’s medications recently. Sometimes, I wonder whether I am just a “normal person” behind the mask.

I know that it is technically difficult to prove that exercise has neuroprotective effect in Parkinson’s patients. Despite this, I believe that exercise has slowed down my disease progression. I hope that my video recording will bring hope and happiness to all Parkinson’s patients in this world, by reminding them that they can still live a physically active life.

Breathing  exercises