What’s the future for us

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I have been diagnosed with Parkinson’s Disease 8 years ago when I’m 38 years old. At first 2 years I did not take it seriously but as the time goes by little by little I feel the symptoms and it’s very progressive. 

What is Parkinson’s Disease

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Parkinson’s disease (PD) is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra.

Symptoms generally develop slowly over years. The progression of symptoms is often a bit different from one person to another due to the diversity of the disease. People with PD may experience:

Tremor, mainly at rest and described as pill rolling tremor in hands. Other forms of tremor are possible
Bradykinesia
Limb rigidity
Gait and balance problems
The cause remains largely unknown. Although there is no cure, treatment options vary and include medications and surgery. While Parkinson’s itself is not fatal, disease complications can be serious. The Centers for Disease Control and Prevention (CDC) rated complications from PD as the 14th cause of death in the United States.

The first step to living well with Parkinson’s disease is to understand the disease and the progression:

It is possible to have a good to great quality of life with PD. Working with your doctor and following recommended therapies are essential in successfully treating symptoms by using dopaminergic medications. People with PD need this medication because they have low levels or are missing dopamine in the brain, mainly due to impairment of neurons in the substantia nigra.

It is important to understand that people with PD first start experiencing symptoms later in the course of the disease because a significant amount of the substantia nigra neurons have already been lost or impaired. Lewy bodies (accumulation of abnormal alpha-synuclein) are found in substantia nigra neurons of PD patients.

Scientists are exploring ways to identify biomarkers for PD that can lead to earlier diagnosis and more tailored treatments to slow down the disease process. Currently, all therapies used for PD improve symptoms without slowing or halting the disease progression.

In addition to movement-related (“motor”) symptoms, Parkinson’s symptoms may be unrelated to movement (“non-motor”).People with PD are often more impacted by their non-motor symptoms than motor symptoms. Examples of non-motor symptoms include: apathy, depression, constipation, sleep behavior disorders, loss of sense of smell and cognitive impairment.

In idiopathic Parkinson’s disease, progression tends to be slow and variable. Doctors often use the Hoehn and Yahr scale to gauge the progression of the disease over the years. The scale was originally implemented in 1967 and it included stages zero to five, where zero is no signs of Parkinson’s and five is advanced PD. It was later changed to become the modified Hoehn and Yahr scale.

Page reviewed by Dr. Ahmad Elkouzi, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.

Causes of Parknson’s

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Parkinson’s disease (PD) is an extremely diverse disorder. While no two people experience Parkinson’s the same way, there are some commonalities. Parkinson’s affects about one million people in the United States and ten million worldwide. The main finding in brains of people with PD is loss of dopaminergic neurons in the area of the brain known as thesubstantia nigra.

10 Early Signs of Parkinson’s Disease

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It can be hard to tell if you or a loved one has Parkinson’s disease (PD).

Below are 10 signs that you might have the disease. No single one of these signs means that you should worry, but if you have more than one sign you should consider making an appointment to talk to your doctor.

Tremor

Have you noticed a slight shaking or tremor in your finger, thumb, hand or chin? A tremor while at rest is a common early sign of Parkinson’s disease.

What is normal?
Shaking can be normal after lots of exercise, if you are stressed or if you have been injured. Shaking could also be caused by a medicine you take.

Small Handwriting

Has your handwriting gotten much smaller than it was in the past? You may notice the way you write words on a page has changed, such as letter sizes are smaller and the words are crowded together. A change in handwriting may be a sign of Parkinson’s disease called micrographia.

What is normal?
Sometimes writing can change as you get older, if you have stiff hands or fingers or poor vision.

Loss of Smell

Have you noticed you no longer smell certain foods very well? If you seem to have more trouble smelling foods like bananas, dill pickles or licorice, you should ask your doctor about Parkinson’s.

What is normal?
Your sense of smell can be changed by a cold, flu or a stuffy nose, but it should come back when you are better.

Trouble Sleeping

Do you thrash around in bed or act out dreams when you are deeply asleep? Sometimes, your spouse will notice or will want to move to another bed. Sudden movements during sleep may be a sign of Parkinson’s disease.

What is normal?
It is normal for everyone to have a night when they ‘toss and turn’ instead of sleeping. Similarly, quick jerks of the body when initiation sleep or when in lighter sleep are common and often normal.

Trouble Moving or Walking

Do you feel stiff in your body, arms or legs? Have others noticed that your arms don’t swing like they used to when you walk? Sometimes stiffness goes away as you move. If it does not, it can be a sign of Parkinson’s disease. An early sign might be stiffness or pain in your shoulder or hips. People sometimes say their feet seem “stuck to the floor.”

What is normal?
If you have injured your arm or shoulder, you may not be able to use it as well until it is healed, or another illness like arthritis might cause the same symptom.

Constipation

Do you have trouble moving your bowels without straining every day? Straining to move your bowels can be an early sign of Parkinson’s disease and you should talk to your doctor.

What is normal?
If you do not have enough water or fiber in your diet, it can cause problems in the bathroom. Also, some medicines, especially those used for pain, will cause constipation. If there is no other reason such as diet or medicine that would cause you to have trouble moving your bowels, you should speak with your doctor.

A Soft or Low Voice

Have other people told you that your voice is very soft or that you sound hoarse? If there has been a change in your voice you should see your doctor about whether it could be Parkinson’s disease. Sometimes you might think other people are losing their hearing, when really you are speaking more softly.

What is normal?
A chest cold or other virus can cause your voice to sound different, but you should go back to sounding the same when you get over your cough or cold.

Masked Face

Have you been told that you have a serious, depressed or mad look on your face, even when you are not in a bad mood? This is often called facial masking. If so, you should ask your doctor about Parkinson’s disease.

What is normal?
Some medicines can cause you to have the same type of serious or staring look, but you would go back to the way you were after you stopped the medication.

Dizziness or Fainting

Do you notice that you often feel dizzy when you stand up out of a chair? Feeling dizzy or fainting can be a sign of low blood pressure and can be linked to Parkinson’s disease (PD).

What is normal?
Everyone has had a time when they stood up and felt dizzy, but if it happens on a regular basis you should see your doctor.

Stooping or Hunching Over

Are you not standing up as straight as you used to? If you or your family or friends notice that you seem to be stooping, leaning or slouching when you stand, it could be a sign of Parkinson’s disease (PD).

What is normal?
If you have pain from an injury or if you are sick, it might cause you to stand crookedly. Also, a problem with your bones can make you hunch over.

What can you do if you have PD?

Work with your doctor to create a plan to stay healthy. This might include the following:
A referral to a neurologist, a doctor who specializes in the brain
Care from an occupational therapist, physical therapist or speech therapist
Meeting with a medical social worker to talk about how Parkinson’s will affect your life
Start a regular exercise program to delay further symptoms.
Talk with family and friends who can provide you with the support you need.
For more information, visit our Treatment page.

Watch and share this public service announcement featuring U.S. Senator Cory Booker that discusses the early warning signs of Parkinson’s disease.

Page reviewed by Dr. Chauncey Spears, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.

Movement Symptoms

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Parkinson’s disease (PD) is called a movement disorder because of the tremors, slowing and stiffening movements it can cause, and these are the most obvious symptoms of the disease. But Parkinson’s affects many systems in the body. Its symptoms are different from person to person and usually develop slowly over time.

There is no single test or scan for Parkinson’s, but there are three telltale symptoms that help doctors make a diagnosis:

  1. Bradykinesia
  2. Tremor
  3. Rigidity

Bradykinesia plus either tremor or rigidity must be present for a PD diagnosis to be considered.

Another movement symptom, postural instability (trouble with balance and falls), is often mentioned, but it does not occur until later in the disease progression. In fact, problems with walking, balance and turning around early in the disease are likely a sign of an atypical parkinsonism.

Additional Movement Symptoms

  • Cramping (dystonia): sustained or repetitive twisting or tightening of muscle.
  • Drooling (sialorrhea): while not always viewed as a motor symptom, excessive saliva or drooling may result due to a decrease in normally automatic actions such as swallowing.
  • Dyskinesia: involuntary, erratic writhing movements of the face, arms, legs or trunk.
  • Festination: short, rapid steps taken during walking. May increase risk of falling and often seen in association with freezing.
  • Freezing: gives the appearance of being stuck in place, especially when initiating a step, turning or navigating through doorways. Potentially serious problem as it may increase risk of falling.
  • Masked face (hypomimia): results from the combination of bradykinesia and rigidity.
  • Micrographia: small, untidy and cramped handwriting due to bradykinesia.
  • Shuffling gait: accompanied by short steps and often a stooped posture.
  • Soft speech (hypophonia): soft, sometimes hoarse, voice that can occur in PD.

What Causes Parkinson’s Movement Symptoms?

Dopamine is a chemical messenger (neurotransmitter) that is primarily responsible for controlling movement, emotional responses and the ability to feel pleasure and pain. In people with Parkinson’s, the cells that make dopamine are impaired. As Parkinson’s progresses, more dopamine-producing brain cells die. Your brain eventually reaches a point where it stops producing dopamine in any significant amount. This causes increasing problems with movement.

Page reviewed by Dr. Chauncey Spears, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.

Diagnosis

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There is no “one way” to diagnose Parkinson’s disease (PD). However, there are various symptoms and diagnostic tests used in combination. Making an accurate diagnosis of Parkinson’s — particularly in its early stages — is difficult, but a skilled practitioner can come to a reasoned conclusion that it is PD. It is important to remember that two of the four main symptoms must be present over a period of time for a neurologist to consider a PD diagnosis:

  • Shaking or tremor
  • Slowness of movement, called bradykinesia
  • Stiffness or rigidity of the arms, legs or trunk
  • Trouble with balance and possible falls, also called postural instability

Often, a Parkinson’s diagnosis is first made by an internist or family physician. Many people seek an additional opinion from a neurologist with experience and specific training in the assessment and treatment of PD — referred to as a movement disorder specialist.

The Parkinson’s Foundation recommends that a person with symptoms resembling those of PD consider making an appointment with a movement disorder specialist. To find a specialist in your community, call our free Helpline at 1-800-4PD-INFO (473-4636) from Monday to Friday, 9:00 AM ET to 8:00 PM ET.

Page reviewed by Dr. Ryan Barmore, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.

Who has Parkinson’s?

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Who Has Parkinson’s?

  • Nearly one million will be living with Parkinson’s disease (PD) in the U.S. by 2020, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease (or Amyotrophic Lateral Sclerosis)
  • Approximately 60,000 Americans are diagnosed with PD each year.
  • More than 10 million people worldwide are living with PD.
  • Incidence of Parkinson’s disease increases with age, but an estimated four percent of people with PD are diagnosed before age 50.
  • Men are 1.5 times more likely to have Parkinson’s disease than women.

Estimated Healthcare Costs Related to PD in the U.S.

The combined direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income, is estimated to be nearly $25 billion per year in the United States alone.

Medications alone cost an average of $2,500 a year and therapeutic surgery can cost up to $100,000 per person.

Parkinson’s Prevalence Project

When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. This information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease. Key terms, like incidence and prevalence, are often used when talking about who has PD. 

Incidence: A measure of new cases arising in a population over a given period of time, typically incidence is measured as the number of people diagnosed per year. 

Prevalence: A measurement of all individuals affected by the disease at a particular time (for example, the number of people with Parkinson’s on March 19, 2018).

To calculate an accurate estimate of the prevalence of Parkinson’s throughout North America, the Parkinson’s Foundation formed the Parkinson’s Prevalence Project in 2014. Prior estimates were based on a small number of cases from areas that are not representative of the nation as a whole — like a previous study from 40 years ago that extrapolated the 26 people with PD in a rural Mississippi county as a benchmark estimate for Parkinson’s prevalence in the U.S.

In addition to finding the most comprehensive number to date, the new prevalence study sought to answer two main questions:

  1. Is the prevalence of PD uniform throughout North America or does it vary by study and/or geography?
  2. What will the data tell us about the prevalence of Parkinson’s and about the disease itself?

The new study draws from larger and more diverse populations. The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number is predicted to rise to 1.2 million by 2030.

Parkinson’s Prevalence Facts

  1. The last major PD prevalence study was completed in 1978.  
  2. The new study confirms that men are more likely to have Parkinson’s than women and that the number of those diagnosed with PD increases with age, regardless of sex.
  3. The new study found that the prevalence of people diagnosed with PD varies by region. Study researchers will now devote more time to find out how.

The Importance of Establishing Parkinson’s Prevalence Numbers

Parkinson’s Prevalence estimates will help the Parkinson’s Foundation attract the attention of federal and state government as well as the pharmaceutical industry to the growing need and urgency in addressing PD. This is an important first step to better understanding who develops PD and why.

The next phase of this study will be to determine the rate of PD diagnosis or incidence, how that has changed over time and what is the rate of mortality among those affected by PD. Determining the prevalence and incidence will allow the PD community to effectively advocate for additional money and resources necessary to support Parkinson’s research.

Parkinson’s Foundation Prevalence Project numbers highlight the growing importance of optimizing expert Parkinson’s care and treatment for people with Parkinson’s, which would help future caregivers and ease the strain on health and elder care systems.

By supporting this study, the Foundation works to better understand Parkinson’s with the goal of solving this disease. Establishing these numbers and using them to educate PD communities and influence legislation will help the foundation provide tailored resources, outreach and advocacy to the underserved PD populations across the nation. The entire published study is available in the Parkinson’s Foundation scientific journal, npj Parkinson’s Disease.Parkinson’s Foundation Parkinson’s 
Prevalence 
Project
People with PD< 3.8K3.8K – 8.0K8.0K – 12.8K12.8K – 20.9K> 20.9KParkinson’s Prevalence by State*
*Click/Tap any state for more information.
930,000people in the U.S. with PD by 2020
1.2 million people in the U.S. with PD by 2030
What is it?
Parkinson’s Foundation study to determine Parkinson’s disease (PD) prevalence in 
North America.
1978
Study nearly doubles 1978 Parkinson’s prevalence 
total.
Study confirms men are more likely to have PD than women. 
Study confirms number of people diagnosed with PD increases with age, regardless of sex.

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Movement Symptoms

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Parkinson’s disease (PD) is called a movement disorder because of the tremors, slowing and stiffening movements it can cause, and these are the most obvious symptoms of the disease. But Parkinson’s affects many systems in the body. Its symptoms are different from person to person and usually develop slowly over time.

There is no single test or scan for Parkinson’s, but there are three telltale symptoms that help doctors make a diagnosis:

  1. Bradykinesia
  2. Tremor
  3. Rigidity

Bradykinesia plus either tremor or rigidity must be present for a PD diagnosis to be considered.

Another movement symptom, postural instability (trouble with balance and falls), is often mentioned, but it does not occur until later in the disease progression. In fact, problems with walking, balance and turning around early in the disease are likely a sign of an atypical parkinsonism.

Additional Movement Symptoms

  • Cramping (dystonia): sustained or repetitive twisting or tightening of muscle.
  • Drooling (sialorrhea): while not always viewed as a motor symptom, excessive saliva or drooling may result due to a decrease in normally automatic actions such as swallowing.
  • Dyskinesia: involuntary, erratic writhing movements of the face, arms, legs or trunk.
  • Festination: short, rapid steps taken during walking. May increase risk of falling and often seen in association with freezing.
  • Freezing: gives the appearance of being stuck in place, especially when initiating a step, turning or navigating through doorways. Potentially serious problem as it may increase risk of falling.
  • Masked face (hypomimia): results from the combination of bradykinesia and rigidity.
  • Micrographia: small, untidy and cramped handwriting due to bradykinesia.
  • Shuffling gait: accompanied by short steps and often a stooped posture.
  • Soft speech (hypophonia): soft, sometimes hoarse, voice that can occur in PD.

What Causes Parkinson’s Movement Symptoms?

Dopamine is a chemical messenger (neurotransmitter) that is primarily responsible for controlling movement, emotional responses and the ability to feel pleasure and pain. In people with Parkinson’s, the cells that make dopamine are impaired. As Parkinson’s progresses, more dopamine-producing brain cells die. Your brain eventually reaches a point where it stops producing dopamine in any significant amount. This causes increasing problems with movement.

Page reviewed by Dr. Chauncey Spears, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.

Non-Movement Symptoms

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Parkinson’s disease (PD) is generally thought of as a disease that only involves movement. But in addition to motor symptoms such as slowness of movement, tremor, stiffness and postural instability, most people develop other health problems related to Parkinson’s. These symptoms are diverse and collectively known as non-motor symptoms.

While family and friends may not be able to see these symptoms, it is important to realize that non-motor symptoms are common and can be more troublesome and disabling than motor symptoms. Some symptoms, such as loss of smell, constipation, depression and REM sleep behavior disorder can occur years before the diagnosis of PD.

Non-motor symptoms can include:

  • Cognitive changes: problems with attention, planning, language, memory or even dementia
  • Constipation
  • Early satiety: feeling of fullness after eating small amounts
  • Excessive sweating, often when wearing off medications
  • Fatigue
  • Increase in dandruff (seborrheic dermatitis)
  • Hallucinations and delusions
  • Lightheadedness (orthostatic hypotension): drop in blood pressure when standing
  • Loss of sense of smell or taste
  • Mood disorders, such as depression, anxiety, apathy and irritability
  • Pain
  • Sexual problems, such as erectile dysfunction
  • Sleep disorders, such as insomnia, excessive daytime sleepiness (EDS), REM sleep behavior disorder (RBD), vivid dreams, Restless Legs Syndrome (RLS)
  • Urinary urgency, frequency and incontinence
  • Vision problems, especially when attempting to read items up close
  • Weight loss

Page reviewed by Dr. Chauncey Spears, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.

Treatment

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There is no standard treatment for Parkinson’s disease (PD). Treatment for each person with Parkinson’s is based on his or her symptoms.Treatments include medication and surgical therapy. Other treatments include lifestyle modifications, like getting more rest and exercise.There are many medications available to treat the Parkinson’s symptoms, although none yet that reverse the effects of the disease. It is common for people with PD to take a variety of these medications — all at different doses and at different times of day — to manage symptoms.While keeping track of medications can be a challenging task, understanding your medications and sticking to a schedule will provide the greatest benefit from the drugs and avoid unpleasant “off” periods due to missed doses.Page reviewed by Dr. Chauncey Spears, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.

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