Parkinson’s disease is a neurological disorder that is mainly characterized by problems with body movements, although other symptoms can also occur. Parkinson’s is a slowly progressive condition that is life altering but not life threatening. However, the rate of progression of Parkinson’s and the degree of affection may vary from one individual to the other. Parkinson’s is the second most common Neuro-degenerative disorder and one of the most common movement disorders.
Our brain controls all our body functions and movements. It does this by sending messages through nerves to different parts of the body. These messages are in the form of chemicals called neurotransmitters. This transmission of messages gets affected in Parkinson’s. One important neurotransmitter that is involved in controlling body movements is called dopamine. A small area in the brain stem called the substantia nigra produces dopamine, a chemical that is responsible for controlling speed and planning of movements.
Today we understand Parkinson’s to be a disorder that results from the loss of dopamine producing cells in the substantia nigra. The symptoms of Parkinson’s begin when there is a reduction of around 70-80% of the dopamine producing cells. This results in errors in planning of a movement, difficulty in movement, muscular stiffness and tremor. As the disease progresses, the amount of dopamine in the brain further decreases, increasing problems with movement control.
Medications are effective at controlling the symptoms of Parkinson’s and help in maintaining a good quality of life. Excellent research is ongoing to find a cure for Parkinson’s.
With increasing life expectancy, the number of people affected with Parkinson’s is thought to rise in the future. Parkinson’s is globally distributed, affecting all cultures and races, with an estimated worldwide prevalence of 11millions people.
Parkinson’s tends to affect more men than women. The prevalence of the condition is considerably higher in the over-60 age group, even though there is an alarming increase of patients of younger age developing Parkinson’s. It has been estimated that approximately 1% of the population over the age of 60 and 4% over the age of 80 are expected to develop Parkinson’s. The most common form of Parkinson’s is adult onset which normally sets in after 50 years, followed by young onset Parkinson’s (between the age group 21-40) and juvenile onset Parkinson’s (relatively rare; <21 years).
In 1817 an English doctor named James Parkinson characterized the condition and authored a work called the “The Shaking Palsy”. However his work went unrecognized until 1861, when a French neurologist Jean Martin Charcot and his other colleagues distinguished this condition from other neurological disorders. It was then that the condition was named as Parkinson’s in honor of Dr. James Parkinson who first described it in detail in medical literature.
Dr. James Parkinson was born on 11th April, which is why this day is celebrated annually as World Parkinson’s Day. This day is dedicated to advocating for people with Parkinson’s.
A few signs & symptoms like those found in Parkinson’s and possible treatments have also been discussed in Ayurveda, (an ancient form of Indian medicine) dating back to 5000BC, as well as more than 2500 years ago in the first Chinese medical text called Nei Jing& materials recovered from Ancient Egypt.
Medical experts are not yet certain what destroys the dopamine producing nerve cells or what predisposes some people to develop Parkinson’s and not others. Many researchers think that the condition may be caused by a combination of genetic and environmental factors and may vary from person to person. However, Parkinson’s is not an infectious disease and it is not contagious.
A major percentage of Patients with Parkinson’s disease do not have a hereditary factor contributing to their illness. The exact cause is still unknown and research is being done in this area.
However, around 15-25% of PD patients do report having a first relative with Parkinson’s. By studying family members with Parkinson’s, scientists have been able to study the role of genes in causing Parkinson’s. It is thought that in the future, this would enable in finding a newer therapies to combat the disease.
Several genetic mutations have been identified to increase the risk of developing Parkinson’s. The important genetic mutations which have been identified so far are Park 1 (alpha-synnuclein) and LRRK2. However the role of genetics in causing Parkinson’s still remains unclear. A lot of research is still ongoing to find more about genetics and its link to Parkinson’s. Scientists feel that a genetic susceptibility to certain environmental toxins may increase the risk of developing the condition.
Some scientists attribute exposures to certain environmental toxins as having a causal role in the development of Parkinson’s. It is thought that these toxins may cause the dopamine producing neurons in the brain to die, eventually leading to Parkinson’s.
A few research studies have implicated that Parkinson’s may be caused by an exposure to herbicides and pesticides and a few others have suggested at the role of exposure to metals like Manganese.
Even though there are no known causes of Parkinson’s, the potential risk factors believed to contribute to the development of for Parkinson’s are enumerated below:
• Age -The single biggest risk factor for developing Parkinson’s is advancing age especially over the age of 60.
• Gender-Men have a slightly increased risk compared to women
• Family History- A few research studies have found out that an individual with a first degree relative with Parkinson’s may have a higher risk of developing the disease.
• Head injury – An increased risk of Parkinson’s is associated with trauma to the brain.
• Environmental risks – Exposure to herbicides and pesticides may increase the risk of Parkinson’s.
• Exposure to metal – Workers exposed to manganese in mines in India have developed Parkinsonian features.
To date, despite intensive research, there is no known prevention for Parkinson’s.
Parkinson’s is often difficult to diagnose and the early signs are missed. Early detection would help in initiating treatment and leading a healthier life. Below is a list of symptoms that happen during the initial stage of Parkinson’s. Having just one symptom as listed below doesn’t call for immediate concern. However if you have two or more of the following symptoms, it would be advisable to take an appointment with a neurologist.
A change in the size of your handwriting may be an early indicator of Parkinson’s. This is mostly noticed in the form of a change in signature. A distinctive change in the handwriting occurs progressively, moving across the page, letters get smaller and less legible. Often in Parkinson’s, skills that require fine motor control like writing, buttoning up a shirt, pleating a saree, counting money are affected early during the course of the disease.
Do you recall of any instances when you couldn’t smell a particular dish or a perfume? Have you felt that you don’t enjoy food as much as before because you can’t taste it that well? Loss of smell, & consequently taste is one of the earliest and least noticed symptoms of Parkinson’s. And because the sensation of taste is linked to smell, most people also tend to experience a loss of appetite.
Has anybody told you that you have a serious expression on your face all the time? Have your family members told you that you don’t blink regularly? Parkinson’s often affects the muscles of the face and produces a mask like appearance.
Has your posture changed from an erect to a more bent posture? A stooped posture is often an early indicator of Parkinson’s. Although back pain and injuries can often produce a similar change in posture, it tends to be temporary and gets resolved with treatment.
Have you noticed that your daily activities like bathing, dressing, eating etc have become slower than usual? Do you feel that your arms and legs have become heavy or stiff? Parkinson’s often manifests with slowed and stiff movements in the early stages.
Have you noticed a slight shaking of your hand, finger or lip? Or does your leg shake when you stand up from a chair? The tremors in Parkinson’s occur usually when relaxed, usually starting in body part (e.g. finger, toe). This is often the first symptom that Parkinson’s begins with. It is important to note that tremors are seen in only 30% of the cases of Parkinson’s and is not mandatory for the diagnosis of Parkinson’s disease.
Do you have stiffness or slowness of movement in the shoulder. Have you been diagnosed with a frozen shoulder? Often Parkinson’s disease presents as slowness of movements and stiffness causing impaired movements. In many instances the restriction or slowness of movement can present as a frozen shoulder causing the diagnosis to be missed or delayed.
Have you noticed a change in your speech. Do people often ask you to speak louder or repeat what you are saying? A change in speech with low volume can be seen in Parkinson’s though usually it is not the first symptom.
Do you have stiffness or slowness of movement in the shoulder. Have you been diagnosed with a frozen shoulder? Often Parkinson’s disease presents as slowness of movements and stiffness causing impaired movements. In many instances the restriction or slowness of movement can present as a frozen shoulder causing the diagnosis to be missed or delayed.
Have you noticed a sudden change in bowel habits from before? Do you feel constipated for long periods of time? Constipation often affects those with Parkinson’s disease. It occurs when bowel movements become difficult or less frequent.
Have you noticed that you sweat more than normal despite no obvious reasons like a hot environment or anxiety? The autonomic nervous system which is affected in Parkinson’s loses its ability to regulate body functions like sweating, glandular function etc. In addition to this Parkinson’s may also cause oily skin and dandruff.
Parkinson’s entails symptoms of many types – motor and non – motor. However, not every symptom affects every PD patients& the intensity of symptoms varies across individuals. Following is an overview of the symptoms, followed by a brief description of each symptom, as well as, methods to manage those symptoms.
When symptoms of Parkinson’s start manifesting, they may be very mild initially and many a times they go unnoticed by the patients and their relatives.
The basic symptoms in Parkinson’s are; tremor (trembling or shaking), stiffness, slowness of movement and difficulty in maintaining posture and balance. These are called as the motor symptoms.
A diagnosis of Parkinson’s is usually made when a person presents with either one or more of the above mentioned symptoms. As mentioned earlier, Parkinson’s tends to affect each person in a different way. For example, some people may predominantly have tremor as their major symptom, whereas others may have problems with balance and walking.
In addition to motor symptoms, Parkinson’s can result in other types of symptoms in varying degrees, and these are known as non – motor symptoms. Symptoms like depression, anxiety, slow bowel movements, sleep disturbances, pain & a few others constitute non – motor symptoms. In fact, these are now recognized by researchers, as early signs of Parkinson’s, and are also believed to precede the motor symptoms.
As a result of these motor and non-motor symptoms, the daily activities and routine for a person with Parkinson’s can get affected. Additionally, it is often seen that symptoms in Parkinson’s can change from day to day and sometimes even from hour to hour.
Since Parkinson’s is progressive in nature, the rate of progression of it and the distribution of symptoms vary from individual to individual. Symptoms often begin on one side of the body and may slowly progress to the other side.
To manage these symptoms, medications are available that may help bring some of the symptoms under control. Additionally, exercise enhances the effects of the medication and works to maintain muscle agility. Both these together, greatly improve the quality of one’s daily life.
Exercises can reduce stiffness and improve mobility, posture, balance and help overcome problems related to balance and walking. It greatly improves the quality of one’s daily life with its direct impact on certain symptoms like stiffness and slowness.
To know more about the symptoms of Parkinson’s you could read the following:
It is an early symptom and is seen in about 70% of people presenting with Parkinson’s.
A tremor usually occurs in the fingers and/ or hand of one side when the patient is at rest or when the patient is walking with his hand by his side or while watching TV.
The tremor seen in Parkinson’s do not occur when the hand is in use and hence is called a “resting tremor”
However it should be noted that not everyone with Parkinson’s may present with tremor as a symptom. Additionally having only a tremor does not always imply that one has Parkinson’s, as it can be a symptom of other conditions as well.
A tremor may begin with the fingers and then proceed to the arm. Sometimes it can proceed to the leg of the same side. In some people, a tremor may begin as a mild twitching of the tongue, lip or jaw. After few years of Parkinson’s, the tremor may involve the other side as well, although it remains most noticeable on the initially affected side.
In the early stages of Parkinson’s, you may be able to suppress your tremor by holding an object like a pen or by making a fist.
Tremor in Parkinson’s often tends to increase with an anxious state of mind. Therefore, some people use different forms of relaxation to help relax themselves and thus cope with their tremor.
Tremor is responsive to medications (like levodopa or dopa agonists). It is important to discuss with your doctor about the medical options available for controlling the tremor.
In addition to these four main symptoms, Parkinson’s also includes other motor symptoms. However, it is important to note that not everyone with Parkinson’s may have these symptoms.
Parkinson’s is no longer thought to affect only the neurons (nerve cells) in the brain. Researchers believe that several other neuronal systems in the body which control sleep, smell, bowel and bladder movement etc. are also affected in Parkinson’s.
Non motor symptoms are now an increasingly recognized entity in Parkinson’s and are thought to precede the onset of motor symptoms by at least a few years. It is important to note that not everyone with Parkinson’s will present with all the symptoms as enlisted.
Sleep disturbances are the most frequent non motor problems seen in Parkinson’s. These often go unnoticed and are now thought to arise even before the motor symptoms of Parkinson’s set in. Sleep disturbances include difficulty falling asleep, frequent awakenings, excessive sleepiness, restlessness in bed or a lack of sleep (insomnia). Such disturbances may be a result of one of the symptoms that make it difficult to feel restful, e.g., pain due to dystonia, stiffness, rigidity or anxiety.
Alternatively, a Parkinson’s Patients’s sleep may be affected by a Parkinson’s medication as well. It is important that you regularize your sleep cycles and maintain good sleep hygiene. Please consult your doctor for a medication review, if you have problems with sleep.
Fatigue is physical and/ or mental exhaustion that is very common in Parkinson’s. It may be one of the first symptoms to appear.
This can be improved with a regularized exercise and rest schedule. If fatigue is associated with a secondary cause like depression or sleep problems then these problems should be assessed by a doctor and treated first.
This is an important symptom which may go unnoticed at times. If you feel you’re sweating more than usual with no precipitating factors like hot weather, anxiety or stress etc please consult your doctor. Parkinson’s may cause oily skin and dandruff. The autonomic nervous system when affected in Parkinson’s loses its ability to regulate body functions like sweating, glandular function etc.
Do you remember of any instances wherein you couldn’t smell a particular dish or a perfume? Have you felt that you don’t enjoy food as much as before because you can’t taste it that well? Loss of smell is one of the earliest and least noticed symptoms of Parkinson’s. And because the sensation of taste is linked to smell, most people also tend to have a loss of appetite.
Cognitive changes start happening in early Parkinson’s and slowly progress thereafter. These include a reduced attention span, changes in memory (especially memory for recent events), and problems with visuo-spatial functioning (eg. direction finding), personality changes and psychosis/hallucinations.
Dementia also occurs in a small percentage of patients with Parkinson’s.
This is caused by the muscles of the bowel moving more slowly than usual, together with the effects of reduced physical activity and/or a poor diet.
This particular symptom can be treated – either through the sensible use of diet and exercise, or by receiving medication from the doctor.
Urinary problems manifest as increased urgency and frequency to visit the washroom, (particularly in the night), incomplete bladder emptying and incontinence. It is generally thought to occur later during the course of Parkinson’s.
It is important that you regulate your water intake, restricting it especially nearing bedtime, and avoid caffeine based beverages as far as possible as these cause dehydration. Other causal factors of similar symptoms like prostate enlargement should also be evaluated particularly in elderly males. Your doctor may refer you to an urologist/gynecologist for further tests and evaluation.
Some patients tend to feel light headed on assuming an upright posture. (I.e. standing up from sitting or lying down). This is also accompanied by a drop in blood pressure. It is thought that a reduction in dopamine levels disturbs the normal functioning of the neurons (nerve cells) that regulate blood pressure.
Please consult your doctor if you feel that this happens to you. Also it is advisable to go from a lying to a sitting posture, spending around 2-3 minutes in the same position and then assuming a standing posture. This will help in stabilizing your blood pressure and reduce the feeling of light-headedness.
Changes to the function of facial/throat muscles can also affect the voice in some people with Parkinson’s, producing speech that may be quiet, hoarse, hurried or hesitant. Difficulties in chewing, swallowing, drooling and dryness of the mouth may also be experienced.
Guidance from a speech and language therapist should be sought for these difficulties.
This is commonly experienced in Parkinson’s, sometimes in response to the diagnosis and sometimes it is caused by the condition itself. Signs of depression include a negative view of oneself, the environment and the future; loss of motivation, energy, and interest (including social and sexual urges); poor sleep and memory; and a decreased appetite.
Features of anxiety and panic attacks are frequently seen in Parkinson’s and are known to affect a person’s emotional wellbeing and sleep wake cycles.
If you are experiencing any of these symptoms, you should discuss it with your doctor.
Sexual dysfunction is often seen in Parkinson’s but goes unreported most of the time. It manifests as erectile dysfunction and reduced libido or sexual drive. It is thought that a reduction in dopamine levels may be a causative factor for underlying sexual dysfunction.
Patients with Parkinson’s who have sexual dysfunction should discuss the same with their neurologist or physician. Often the neurologist may refer you to a specialist like an urologist or a gynecologist for further evaluation.
Co-existing factors like depression if present should be treated first. Also other factors like cigarette smoking, alcohol, and the intake of certain medications which alter sexual function need to be evaluated.
Patients may experience cramps, aches and feeling of numbness, tingling sensation, coldness, or burning. This most frequently occurs in the legs, although lower back pain and headaches are also common.
It would be advisable to consult your doctor if the symptoms persist.
Diagnosis of Parkinson’s in its early stages is sometimes difficult because its features may resemble other disorders (eg. some patients can present as a frozen shoulder and may be asked to see an orthopedic surgeon rather than a neurologist). Often the family physician may refer one to a neurologist for confirmation of the diagnosis. Sometimes it may take a few years for one to be diagnosed with Parkinson’s which may be frustrating.
Usually the doctor reviews one’s medical history, followed by a thorough clinical examination. Here the doctor then observers for certain signs and symptoms like generalized slowness of movement (bradykinesia). Your arms will be observed for tremor and your limbs and neck will be checked for stiffness (rigidity). Also your doctor will observe your walking style and look for small steps. The doctor may pull you backwards in order to check your balance (postural instability). Since, tremors, bradykinesia, rigidity and postural instability are the four cardinal symptoms of Parkinson’s, observing any of these in oneself, is reason enough to bring it to the notice of one’s doctor.
Diagnosis of Parkinson’s is purely based on a clinical exam since there are no standard tests developed to diagnose Parkinson’s. At times, additional tests may be ordered by the doctor to rule out other conditions that mimic Parkinson’s.
A favorable response to Levodopa (a drug for Parkinson’s) is also considered as supportive of the diagnosis. However, the method of diagnosing differs from doctor to doctor. Since Parkinson’s closely resembles other neurological disorders, it may often go misdiagnosed.
Taking a second opinion is purely a personal choice. Often a physician may refer one to the neurologist for diagnosis. However if one isn’t convinced about the diagnosis, one could consider seeking the opinion of a movement disorder specialist.
A diagnosis of Parkinson’s is often life changing and can be emotionally difficult to take. But, remember you aren’t alone. At this time, it is important to seek the support of your family and healthcare team which will help you in coming to terms with Parkinson’s & managing the condition in an optimum way.
There are no simple tests like a blood test etc. to diagnose Parkinson’s. Researchers are working to develop a test that can identify Parkinson’s in its early stages itself.
Brain scans may help in detecting the loss of dopamine in the brain and reduce misdiagnosis. Neuro imaging that may be done might include:.
This includes a series of X-rays that are passed through different directions that provide an anatomical view of the brain. This helps in excluding blood diseases and tumors of the brain which can mimic Parkinson’s.
This uses magnetic currents to create images of the brain. This gives a better view of the deep structures of the brain. MRI scans are usually normal in Parkinson’s but are useful at times in identifying conditions that can mimic Parkinson’s and helps in distinguishing Parkinson’s from other forms of Parkinsonism (like Progressive Supranuclear Palsy (PSP) or Multiple System Atrophy (MSA).
Parkinson’s is a neurological disorder that progresses slowly with time. Symptoms normally begin on one side of the body and usually spread to the other side as Parkinson’s progresses. It is difficult to estimate the rate of progression as every individual with Parkinson’s may experience different symptoms. Symptoms present in the earlier stages of the condition may worsen and new symptoms may appear during the course of Parkinson’s.
Medications help in managing the symptoms but unfortunately, aren’t implicated for slowing the progression of Parkinson’s. Throughout the course of the condition, it is important to be aware of how your symptoms are changing. It is imperative to visit your doctor regularly as your medications need to be adjusted as Parkinson’s progresses.
During the initial stages of Parkinson’s, the symptoms may be mild and interfere with fine motor activities like buttoning a shirt, tying shoe laces, a change in handwriting and slowed movement. Tremor if present may appear on one side of the body, starting either with the finger/hand or toe/foot. A person continues to remain independent in these stages and can lead a near normal life with medications and supportive therapies.
As Parkinson’s progresses, the symptoms that appeared earlier tend to become more pronounced and problems with balance and change in posture become evident. Additionally, after several years of Parkinson’s the effect of medication may fluctuate suddenly.
Dementia may also develop in 30% of the patients with Parkinson’s. It may not happen to everyone and may develop 10-15 years after the onset of Parkinson’s. The major signs of dementia in Parkinson’s include memory problems, distractibility, reduced attention span, slowed thinking and reduced motivation. People who experience hallucinations) are at an increased risk for developing dementia.
Treatment for Parkinson’s is aimed at controlling the symptoms and maintaining a normal life as far as possible with other supportive therapies. There is no single, optimal treatment method for Parkinson’s because each individual is affected by the condition in a different way.
Research into finding a cure for Parkinson’s continues. Studies have demonstrated that the quality of life of a Patient with Parkinson’s may deteriorate if treatment is not initiated immediately or shortly after diagnosis.
The symptoms can usually be effectively controlled using a combination of therapies which may include the following:
(Physiotherapy, Speech Therapy, Occupational therapy etc.)
For further support please contact NCCI by dialing 021-32259959 / 021-32258848
There are a variety of medications that are used to treat the symptoms of Parkinson’s. However each Patient with Parkinson’s requires individualized care and treatment. Most of the commercially available medications control Parkinson’s symptoms by increasing levels of dopamine (cursor – a neurotransmitter/ chemical that helps in sending messages) in the brain.
It is imperative to work with one’s healthcare team to find a treatment regimen that works best. The choice of drug depends on the symptoms, presence of other medical problems and age at presentation. It is also advisable that one should never change or stop taking any medication without consulting the doctor/neurologist.
The main aim of drug treatment in Parkinson’s is;
• To increase the level of dopamine that reaches the brain,
• Stimulate the parts of the brain where dopamine works, or
• Block the action of other chemicals that affect dopamine, such as acetylcholine.
Drug treatment in Parkinson’s is prescribed to suit the individual, both in terms of the dosage, the form of the medication (e.g. slow release) and the times the drugs are taken. A combination of different medications is often required to provide the most effective symptom control.
Treatment is generally started with low doses of a drug; this dose is then gradually increased until the required control over the symptoms is achieved. This gradual introduction helps avoid side effects. Nonetheless, some drugs may have unavoidable side effects. Thus it is important to have a thorough consultation with the doctor so as to be aware of and prepared to cope with the same.
The dose and timing of medications may need to be adjusted over time as one’s symptoms change (or side effects occur). Accordingly, one’s doctor will probably want to check one’s response to the medication.
To know more about how one reacts to medication, you can visit our sections –
PLEASE NOTE: No two people with Parkinson’s are exactly the same, and each will have a different combination of symptoms and medication. The drugs mentioned here and some of the information related to them may change from time to time.
A quick glance at the drugs/medication available for the management of PD.
• Levodopa
• Dopamine agonists
• Amantadine/ Dopaminergics
• Anticholinergics
• Mono Amine Oxidase Inhibitors (MAO-B inhibitors)
• COMT inhibitors
Surgery for Parkinson’s has come a long way since it was introduced in the 1960s. Surgery can offer benefits to some people by improving certain symptoms and sometimes reducing the need for medications. Currently, surgery is not known to provide a cure for Parkinson’s, although it can offer better control of Parkinson’s symptoms. However, even following a successful surgery, a person with Parkinson’s is still required to take continuous medication.
People with Parkinson’s who are likely to benefit from surgery are those who have previously had a good response to their Parkinson’s medication (particularly levodopa).
Generally surgery is advised for those in whom this response has become unpredictable and/or short lived motor fluctuations or who are troubled by dyskinesias Surgery has not been shown to improve symptoms that do not respond to dopamine medication. However, tremor which can be resistant to Parkinson’s medication generally responds well to surgery.
Surgery is advised by doctors only after due consideration and thorough and detailed assessments.
There are two main forms of surgery used currently in PD
The main therapies are listed below
• Physiotherapy – This improves general health and fitness and is extremely helpful in reducing slowness in movement, stiffness, gait and balance difficulties.
• Speech Therapy – This therapy focuses on improving the clarity and volume of speech and provides tips for better communication.
• Occupational Therapy – Most PwPs have trouble in dressing up, eating, writing, personal hygiene, getting up from bed, car, chair etc. Through OT, they are taught to make certain changes and modifications which help them to perform these tasks with ease.
• Diet and Nutrition – A dietician advises on a healthy diet and specific dietary needs. They can offer advice on how diet can ease some symptoms, such as constipation, etc. They may also liaise with a speech and language therapist regarding swallowing and eating difficulties. Important information is provided on how to enhance the effect of medication and what diet is necessary to maintain a healthy lifestyle. Browse our resources for Diet and Nutrition for Parkinson’s
• Counseling / Psychotherapy – Several PwPs feel extremely sad and worried due to Parkinson’s or guilty and conscious. Through psychotherapy, these issues are discussed with the aim of enabling PwPs to accept their difficulties and improve the quality of their life through various means. While caring for their loved one with Parkinson’s, family members also face various difficulties. This therapy allows them to share their concerns and helps them realize that, along with caring for their loved one they also need to care for themselves.
• Cognitive Rehabilitation – This mode of therapy provides tips and strategies to help address problems such as forgetfulness, difficulty concentrating and paying attention, planning etc. Browse our resources for Cognitive exercises for Parkinson’s
People with Parkinson’s, most likely, will never forget the first time they heard their doctor speak the words, “you have Parkinson’s”. Initially, it may have been difficult to even accept or believe that these words could be true. You may have gone through a host of different emotions like feeling shocked with the diagnosis, feeling sad and angry because it happened to you; and then you may have felt helpless, anxious, and worried about coping with your daily life and the future.
However, you must not let these emotions take over your life; firstly, you must know that experiencing these emotions is a normal reaction to a chronic diagnosis. Secondly, if you ask the question “Why me”? Why have I been affected by this?”, remember that there are many other people with Parkinson’s, who are probably asking the same question, and therefore you are not alone. Thirdly, and most importantly, always keep in mind that support is available to help you deal with the diagnosis and progression of the condition.
Make a decision today to take control of your life with Parkinson’s. The key to living an optimally healthy, happy and fulfilling life is in your hands. Here are some pointers to help you take control.
It is important that you accept that you have Parkinson’s. Then only will you be able to take control of it. Acceptance does not mean you’re “giving up” instead it is the first hurdle you must cross in order to take control of this condition.
Find a doctor who you are confident about and whom you feel comfortable with, as he/she will become an important part of your journey with Parkinson’s. You are entitled to take a second opinion, but a trusting relationship with your doctor is essential.
it is important to understand how your Parkinson’s symptoms may vary during the day so that you can plan your outings and activities accordingly. Your Parkinson’s is your own – do not assume that you will experience the same symptoms or problems as someone else. Learn to recognize your own symptoms and share any unusual observations with your doctor and healthcare team.
Due to the nature of Parkinson’s, it might be difficult to do certain things as well or as fast as you were able to previously. But it is very important to be patient with yourself and accept these changes. Try not to give up; even if an activity might take you longer, it is important that you complete it instead of giving up.
Everyone is capable of doing certain things and incapable of others. With Parkinson’s, you must accept that there will be things that you might not be able to do and things that you might find difficult to do, but there will also be things that you can do. It is important to focus on what you can do.
It is important that you make an effort to be positive. It may not be possible to have a positive attitude at all times but it is important to constantly remind yourself to try. It has been observed that those affected with Parkinson’s who have a positive attitude towards Parkinson’s have a slower progression of the symptoms of Parkinson’s. So make an effort today to change your attitude and experience the difference.
Sometimes when things get hard you may want to give up. But keep strong and don’t give up. Motivate yourself. Tell yourself, “I have Parkinson’s, but Parkinson’s will not have me. I have Parkinson’s, but it will not control how I live my life.” Constantly restating these thoughts to yourself, will allow you to continue to do the many tasks you enjoyed.
It is important for you to keep your mind active and attentive by keeping yourself busy throughout the day. Ways to keep yourself busy could include going for outings or attending social functions, taking up a hobby, cooking, gardening, music, art etc., getting a pet, preparing for festivals and religious ceremonies, conducting prayer ceremonies, traveling, giving back to society in the form of social service, doing the crossword, playing card games, interacting and spending time with your children and grandchildren etc. The busier you are the less time you will have to think about your Parkinson’s.
Talking to people who are going through the same things as you are will help you to get a lot more perspective on the condition and its management. You can learn new techniques on how to deal with your difficulties and problems. Joining a support group will help you meet others with the Parkinson’s.
Living with Parkinson’s can be difficult most of the time but you can help change that by improving your lifestyle. Here’s how.
As Parkinson’s progresses, your symptoms might also change. Your current symptoms might become more severe, and new symptoms might also develop. You may feel that the medication may not be as effective in controlling the symptoms as they were before as a result you may find that you require help from others to do your routine activities like dressing, eating, bathing etc.
Certain symptoms like poor balance, difficulty walking and fear of falling may prevent you from being able to leave our house or your bed without assistance. Ask for help from your caregivers or contact us for information on assistive aids that you could use.
There are also specific exercises and fun activities which you can do at home on the bed or while sitting. Contact us for more information.
In addition to this your non-motor symptoms may become more pronounced further affecting your ability to carry out your activities. You might get frustrated and impatient, but it is important to remember that you must remain patient with yourself and focus on what you can do. Help and support is available.
A caregiver is someone who lives with, regularly helps or looks after a person with Parkinson’s and is directly involved in his/her care and wellbeing. The following section focuses on the various aspects of this role. Read more by visiting our following sub-sections on Care-giving for Parkinson’s.
• Dealing with the Diagnosis and how You can help
• Challenges you may face
• Caring for the caregiver
• Your healthcare team
• Losing a loved one – Dealing with death and loss
Myth: Parkinson’s is contagious.
Reality: Parkinson’s is a neurological (occurring in the brain) condition which is not contagious and cannot be passed on from one person to the other.
Myth: All people with Parkinson’s have tremors.
Reality: Although tremor is the most widely recognized symptom of Parkinson’s, not all people who have Parkinson’s have tremors. Parkinson’s may manifest with a variety of other symptoms too.
Myth: Tremor is seen only in people with Parkinson’s.
Reality: While tremor is a common symptom of Parkinson’s, tremors can be caused by many other conditions as well. A neurologist will help you identify the cause of the tremor.
Myth: Parkinson’s is only a movement related disorder.
Reality: Parkinson’s affects many areas of the brain and it has a large number of symptoms that are not related to movement alone. These are called non-motor symptoms and include difficulty swallowing difficulties, constipation, cognitive difficulties, loss of smell, sleep disturbances, sweating, sexual disturbances, impulse control difficulties, fatigue, pain, anxiety and depression.
Myth: Parkinson’s affects only older people.
Reality: A majority of people with Parkinson’s develop the condition after the age of 60. However, Parkinson’s can also occur in younger people.
Myth: Parkinson’s is a genetic condition.
Reality: The cause of Parkinson’s is not yet known. There are many factors that contribute to the development of Parkinson’s including environmental and genetic factors. It is extremely rare for a person to have Parkinson’s due to hereditary factors, it has been found in only 4-5% of the people with Parkinson’s.
Myth: Parkinson’s can be cured.
Reality: Currently, there is no cure for Parkinson’s. This is because the cause of Parkinson’s is still not known. However, there are various treatment options available that will help to manage your symptoms and slow the progression of Parkinson’s. However, there is research being conducted to find out the cause of Parkinson’s as well as a cure for it.
Myth: Medication is the only treatment.
Reality: While medications are important to help control the symptoms of Parkinson’s, a combination of medications and other therapies like DBS are the best treatment for management of your symptoms. The other forms of therapy that are useful to help control the symptoms of Parkinson’s are physiotherapy, speech therapy, occupational therapy, yoga, counseling, cognitive rehabilitation, dance therapy and many others.
Myth: There is not much that can be done to help a person with Parkinson’s.
Reality: There are many effective ways to deal with the symptoms of Parkinson’s. There are many resources available for people with Parkinson’s and their families – to help them understand the condition, cope with it and manage their lifestyle. You can get information from the internet, books etc. Attending support groups and physiotherapy sessions will also be beneficial to those who have Parkinson’s as they can get information about Parkinson’s from these groups as well as get to meet other people with Parkinson’s.
Myth: People with Parkinson’s cannot live independent and productive lives.
Reality: With medication, regular exercise and a healthy diet, many people with Parkinson’s can live on their own and can be as productive as others.
Myth: Parkinson’s is fatal.
Reality: Parkinson’s is not a fatal condition.
Myth: I am responsible for Parkinson’s and I could have done something to prevent it.
Reality: Please remember that no one is responsible for acquiring Parkinson’s. It is a neurological condition which could affect anyone; therefore nobody can be blamed.
Deep brain stimulation, commonly referred to as DBS, is a surgical treatment for patients with Parkinson’s disease, essential tremor and other disorders. It works like a pacemaker for the brain. Tiny electrodes, or leads, are placed in one or two parts of the brain that control movement. They’re connected by thin wires to a small device implanted just under the skin, usually in the chest.
The device, often called a stimulator, sends low-voltage electrical pulses to the leads, helping the brain control movement.
Many patients with Parkinson’s or essential tremor report a dramatic improvement in quality of life. Patients often need far less medication to control symptoms. They can regain the ability to perform everyday tasks, such as eating and dressing on their own.
No, DBS won’t cure Parkinson’s or essential tremor, but it will slow the progression of either disease. The stimulator settings can be adjusted, however, to better control symptoms as changes occur.
DBS is only beneficial for those patients who are candidates for Deep Brain Stimulation (the criteria varies from disease to disease)
Yes, DBS involves surgery, and all surgery carries some risk but modern DBS procedures are safer and well tolerated.
Risks, however, are generally low. A recent three-year analysis of U.S. academic medical centers, including OHSU, found that among 2,038 patients who had DBS, seventy-two had minor complications. Among the 219 patients who had DBS at OHSU, none died and one had complications.
Unlinke Thalamotomy, Pallidotomy or Lobotomy, DBS doesn’t destroy the brain tissue and is Reversible.