A Guide to Parkinson’s Disease
Parkinson’s Disease has been described (among other things) as a type of movement disorder because the part of the brain that coordinates movement is degenerating. It progresses very slowly. Gradually muscles stiffen, movements slow down. This leads to impaired coordination which affects balance and eventually causes falls.
In addition to movement disorders, there are non-motor symptoms that, for some, may be even more difficult to live with.
In addition to physical effects, there are huge emotional and psychological issues both for the individual with this diagnosis and for family and friends.
The cause of Parkinson’s is largely unknown. Sometimes Parkinson’s disease is genetic with 15-20% of patients having a history of disease in their families. Sometimes it is environmental.
Basically, though, no one knows the exact cause or cure – but they are working on it (see treatment and cures below).
Despite benefits obtained with an early diagnosis, many aging adults and their caregivers confuse the warning signs with normal aging and don’t seek help.
This is why I am stressing the importance of contacting a Neurologist with the latest clinical information wherever you are located as soon as you suspect anything. The neurologist will assess your personal medical history and conduct a comprehensive neurological exam. You may be pleasantly surprised to find out that your tremors are unrelated to Parkinson’s Disease.
But if you do receive this diagnosis, do not despair. Even the best doctors make mistakes.
Parkinson’s Disease is not a death sentence. In fact, your lifespan will probably be about as long as the general population.
Despite all the available information online, keep doing your research and remember that myths and misconceptions abound.
Each patient is unique with different needs and reactions to their treatment. What works for one may not be tolerated or work well for another.
How Widespread is this Disease?
Parkinson disease is the second most common neurodegenerative disorder after Alzheimer’s disease. Globally, it is estimated that 10 million people have Parkinson’s.
United States Parkinson’s Disease Statistics
Approximately one million Americans have Parkinson’s and there are 60,000 new cases every year. 80% are people over 60 with a majority being male.
United Kingdom Parkinson’s Disease Statistics
Someone is diagnosed with Parkinson’s every hour in the U.K. Most are over 50 and currently there are approximately 145,000 diagnosed.
Canada Parkinson’s Disease Statistics
Approximately 100,000 Canadians have Parkinson’s and there are 6,600 new cases yearly.
Who Was James Parkinson?
In 1817, a surgeon working in London named James Parkinson wrote an essay about “shaking palsy” or “‘paralysis agitans”. This is considered to be the first clear medical description of this syndrome – which he observed in six individuals:
“Involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forward, and to pass from a walking to a running pace: the senses and intellects being uninjured.”
After James Parkinson’s 1817 revelations, it took 140 more years before anything was developed to treat the symptoms of his “Shaking Palsy”. Two centuries later, there is still no cure.
BUT..do not lose hope! Current research on treatment, medication and cure is described below.
What Is Actually Going On In The Brain?
Very (very) simply: Dopamine is a chemical in our brain. It is released by brain neurons to send an electrical signal between one neuron to the next to pass on a signal to and from the central nervous system. In other words – it serves as a neurotransmitter.
If these dopamine carrying neurons in one of the specific brain pathways degenerate, one’s motor control is affected – a hallmark of Parkinson’s Disease
Up until very recently the medical and scientific community believed that the nerve cells that produce dopamine had died. However, in 2018, researchers discovered that these cells are not actually dead – but dormant.
Symptoms and Signs of Parkinson’s Disease
Tremor
With Parkinson’s, one of the most obvious initial symptoms is a hand or finger tremor that occurs when one’s muscles are relaxed. This is called a “resting tremor” (because nothing is moving except the tremor).
In the initial stages only about 50% may have these resting tremors. Unfortunately, if you have NO tremors you still have a 50% chance of having Parkinson’s Disease.
Many lay people and non-specialists hear the word “tremor” and think that means Parkinson’s Disease – but as you now know (assuming you are reading the links) they may very well be incorrect.
The point is, if you DO have tremors it could be due to any number of causes…just because It looks and acts like a duck…
There are lots of common causes of tremor:
- Prescription medications
- Various diseases
- Whiplash and other Injuries such as PTSD
- Caffeine
The most common causes of tremors are:
Medical conditions can also cause tremors :
- Stroke
- Traumatic brain injury
- Multiple sclerosis, your immune system attacks your brain and spinal cord
- Alcoholism
- Hyperthyroidism, your body produces too much thyroid hormone
Slow Movements
Neurologists use the word “Bradykinesia” to describe a slowing down of all physical actions and a reduction in one’s quality of movement.
Examples of this include those automatic movements we do such as blinking or swinging our arms when we walk. Even facial expressions are affected.
These symptoms alone do not necessarily mean one has Parkinson’s Disease.
A patient would ALSO have to have either Tremors or Rigidity.
Rigidity
Like tremors, rigidity is considered a primary motor system used to diagnose Parkinson’s Disease.
We all experience various degrees of stiffness after a full day of gardening or a gym day (when the gyms used to be open:) That does not mean we have Parkinson’s Disease, however it is important to know that this symptom can start years before the diagnosis.
90% of people with Parkinson’s experience rigidity at some point during their Parkinson’s progression.
Balance Problems
Considered to be one of the most distressing symptoms, postural imbalance usually shows up later on in the disease progression. Unlike the other symptoms, it is not related to the reduction in dopamine but rather the result of damage to other parts of the brain.
Balance problems cause falls that send patients to the hospital and for many with Parkinson’s Disease are the cause of death.
Depression
Lisa Shulman, M.D., professor of neurology at the University of Maryland School of Medicine states “Depression is often among the very earliest signs of Parkinson’s disease.”
Suma Surendranath, professional engagement and education manager at Parkinson’s UK, says: “Depression may occur amongst people with Parkinson’s as a result of the condition as dopamine, the neurotransmitter that becomes depleted with Parkinson’s, is [also] involved in motivation and a sense of reward.”
Diagnosis Of Parkinson’s Disease
Parkinson’s can be difficult to diagnose. Neurologists will look at medical history and conduct a physical. Primarily they diagnose by neurological tests and looking at symptoms. Early signs are subtle and easy to miss.
There are many diagnostic related tests in development. One interesting test reveals a symptom that shows up prior to other symptoms related to odors emitted by someone with Parkinsons.
Because there is no specific test that fits every case, Neurologists may also use other tests such as blood tests, MRIs and PET scans. Many of these tests rule out other conditions that may be causing the presented symptoms.
Most of the time there are 4 cardinal signs primarily used to diagnose Parkinson’s Disease .
If you want to remember this – call it the BRIT Test based on the first letter of each cardinal condition:
1. Bradykinesia – slowness in movement
2. Rigidity – muscles get rigid and stiff
.3. Instability – balance weakness
4. Tremors – most usually resting tremor (described earlier)
- Parkinson’s Neurological Exam Video presented by Dr. Kathleen Poston, faculty at Stanford and a neurologist
- 7 Things to Do Now If Newly Diagnosed with Parkinson’s Disease
Diseases That Mimic Parkinson’s
With the many symptoms that exist no wonder so many mistakes occur sometimes with disastrous results
Atypical Parkinsonism
Parkinsonism is a very complicated group of diseases with symptoms similar to Parkinsons. It is caused by brain disorders, brain injuries, or certain drugs and toxins.
Like those with Parkinson’s, these patients may have the following:
- Tremors that occur when muscles are relaxed
- Stiff muscles
- Slow movements
- Problems with balance and walking
Yes – it sounds like Parkinson’s – but it’s not. In fact, studies have shown that one in four are misdiagnosed.
So how does one know? One of the ways is through a process of elimination – such as prescribed Parkinson’s medication that does not work.
It takes real expertise to diagnose these accurately. Diagnoses are changed as new symptoms develop.
Parkinsonism: More on Causes and Coping Strategies
Types Of Parkinson’s Disease
Early Onset Parkinson’s Disease (EOPD)
Out of the 60,000 new cases of Parkinson’s diagnosed yearly in the United States, approximately 6,000 -12,000 of these are people under the age of 50 and often there is a genetic cause. This is often described as “Young Onset”.
Parkinson’s Disease has both motor related and non-motor related symptoms. Unlike with older adults, the symptoms that first show in younger people tend to be non-motor related. The silver lining (if there is one for this disease) is that with early onset, progression is slower, younger people have fewer chronic diseases to contend with and they are the best candidates for innovative surgical and other medical innovation.
Late Onset Parkinson’s Disease (LOPD)
It appears that patients who are older when symptoms first appear tend to live shorter lives than those with early onset Parkinson’s Disease. There is a variety of reasons for this that include having dementia and psychotic symptoms. (more on Parkinson’s Dementia below)
Stages of Parkinson’s Disease
Life with Parkinson’s is not a piece of cake.
There are many different conditions that do not show up with everyone. Thus, some neurologists describe various stages and others do not. For those who describe stages, the two most commonly used are these:
1) Hoehn and Yahr Scale – 5 distinct stages of progression
2) Unified Parkinson’s Disease Rating Scale – minimal, mild, moderate or severe
How To Minimize Parkinson’s Disease Progression
Exercise
- This study provides compelling evidence that consistent aerobic exercise is the only strategy for slowing Parkinson disease progression.
- Additional research that breaks down benefits, types of exercise, intensity etc.
Diet
- The effects of low fat versus ketogenic diets on motor and non-motor symptoms.
- The benefits of the Mediterranean diet
- Addressing insulin resistance dramatically minimizes symptoms and progression
Environment
- 7 Scientifically Backed Ways to Prevent Parkinson’s Disease
- A partial list of potential protective factors:
- Caffeine: drinking caffeine in coffee or tea
- Uric acid or urate: High levels (associated with meat) can cause gout and kidney stones. Yet — researchers found that men (NOT women) with higher levels (in the normal range) have a lower incidence of Parkinson’s Disease.
- Anti-inflammatory drugs: Several studies have shown that people who regularly take anti-inflammatory drugs such as ibuprofen have a lower risk of Parkinson’s Disease.
- Smoking: cigarette smoking decreases risk of Parkinson’s Disease (but it still is not good for you)
- Exercise: Increased activity early in life has been associated with a lower risk of developing Parkinson’s later in life.
The Connection Between Parkinson’s Disease and Dementia
Parkinson’s Disease Dementia (PDD) is diagnosed if the onset of dementia occurs a year or more after the onset of motor symptoms.
If symptoms of dementia appear before or at the same time as symptoms of Parkinson’s, it is called Dementia with Lewy bodies (and the difference between two forms is significant.)
Who Will Get Dementia?
- 50% of Parkinson’s Disease sufferers within 8-10 years
- 80% Parkinson’s Disease sufferers within 20 years
Are you wondering whether a Parkinson’s diagnosis means you will eventually get dementia? The statistics are not in your favor – but there may be a way to find out.
There is a MRI test that is able to predict cognitive impairment in Parkinson’s patients. This test targets the specific brain region that is damaged before any thinking and memory symptoms appear.
Symptoms of Parkinson’s Disease Dementia:
- Changes in memory, concentration and judgment.
- Trouble interpreting visual information.
- Muffled speech.
- Visual hallucinations.(seeing things that other people do not see)
- Delusions, paranoid ideas. (feeling suspicious with false, strange beliefs)
- Depression
- Irritability and anxiety (sometimes with impatience or aggression)
- Sleep disturbances, including excessive daytime drowsiness and rapid eye movement (REM) sleep disorder.
Can We Predict or Reduce Dementia Risk?
Responding to this question is a bit of a challenge and there is not much to go on.
The bottom line is that we still don’t know the exact cause of Parkinson’s Disease, nor do we fully understand why Parkinson’s Disease leads to dementia.
What we do know about Parkinson’s Disease and dementia risk is the following:
- Age is the single largest risk factor.
- Greater severity of motor symptoms at initial diagnosis of Parkinson’s Disease (may increase risk)
- MCI (mild cognitive impairment) at initial diagnosis of Parkinson’s Disease (may increase risk)
- Hallucinations (may increase risk) – does not always mean one has Dementia!
- Excessive daytime sleepiness (may increase risk)
- Hypertension (high blood pressure) may (or may not) be a risk factor.
- At one time considered a risk factor – studies have shown just the opposite when it comes to smoking.
Specific Treatments for Parkinson’s Disease Dementia
Every Parkinson’s patient is unique and different. Individual needs and reactions to treatment will be different. The treatment that works for one person may not be tolerated or work for someone else.
There is usually a need for a range of professionals to be involved in supporting those with Parkinson’s Disease Dementia mainly because of the variety of both motor and non-motor symptoms.
Caring for someone with Parkinson’s Disease Dementia (or any kind) is extremely stressful. It often helps to be able to control some of the symptoms that contribute to the caregiver’s stress as well.
Unfortunately many of the drugs currently used do not adequately address non-motor symptoms or dementia related problems in particular. As one example, most Parkinson’s patients are already taking a drug to control their motor systems (such as Levodopa). Unfortunately – drugs for motor symptoms tend to increase hallucinations and worsen cognition. This can be a big problem.
Since there are so many needs to deal with it is probably best to focus on the symptoms that are the most challenging for the person with this disease or for those who provide direct care (especially family members).
Parkinson’s Disease drugs can have many side effects, and when it comes to treating Parkinson’s Disease Dementia a balance has to be struck which involves trying out different drugs and combinations (yet again).
Obviously, the ideal approach is always to first look at non-drug approaches.
For more on this subject download this PDF: A Patient’s Guide to Parkinson’s Disease Dementia
Current Research: Treatment, Medication and Cures
This excellent essay sums it up exactly: Why Isn’t There A Cure?
In the meantime, there are currently many types of medication (including surgery) to help manage tremor, movement, walking etc. Primarily, they either increase or provide substitutes for Dopamine which cannot be given directly because it cannot enter the brain from the outside.
Research and development around the world is thriving.
Over the past few years scientists and researchers are finding that it is possible for our brains to be developing Parkinson’s for 20 years or more prior to showing the first symptoms. They are working on developing a therapy that treats the root causes of Parkinson’s and not just the symptoms.
Currently, Parkinson’s UK is funding about 50 projects investigating everything from gut bacteria to stem cells. Be sure to click on the Parkinson’s research pipeline to read about more new discoveries evolving into new treatments.
Parkinson’s Disease Resources
- Parkinson’s Foundation – Search via zip code for your local chapter. Chapters provide information about local resources and services, including support groups, exercise and wellness classes, education programs and more. Scroll down page for global list by country. Call 1-800-473-4636 for additional help
- American Parkinson’s Disease Association – provide support, education, and research that will help everyone impacted by Parkinson’s disease live life to the fullest.
- Stanford Parkinson’s Community Outreach – The Stanford Parkinson’s Community Outreach team provides those with Parkinson’s Disease (PD), their families, caregivers, physicians, and other healthcare professionals with education, assistance, and resources.
- Davis Phinney Foundation – Creation of programs and quality of life research for the Parkinson’s community.
- Michael J. Fox Foundation for Parkinson’s Research – The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today.
- Parkinson’s UK – Improving life for everyone affected by Parkinson’s. Together we’ll find a cure.
- Parkinson and Movement Disorder (PMD) Alliance – an independent, national nonprofit dedicated to providing opportunities for people to learn, live more fully and spark meaningful connections around them.
- The Parkinson’s Outcomes Project: Since 2009 – this is the largest clinical study of Parkinson’s disease with more than 13,000 participants in five countries including everyone with Parkinson’s (from the newly-diagnosed to people who have lived with Parkinson’s for 20 years or more). This research is providing a comprehensive view of the disease and its overall impact on people’s lives.
- Parkinson’s Research, Education and Clinical Center – a nationwide Veterans referral center providing comprehensive care to patients with Parkinson’s disease and other movement disorders.
- Parkinson Spectrum Disorders – Weill Institute for Neurosciences
- The Lewy Body Dementia Association
- Next Step In Care – Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients.
Caregiver Support Communities
Participating in a caregiver support community will help you. Here is why.
- The National Center on Caregiving: A central source of information on caregiving and long-term care issues for policymakers, service providers, media, funders, and family caregivers throughout the USA
- Caregiver Action Network: Resources include a Peer Forum, a Story Sharing platform, the Family Caregiver Tool Box, and more.
- Rare Disease Caregivers: A guide for family caregivers of loved ones with rare diseases
- Parkinson’s and Caregiving: Lots of information about being a caregiver
- Care For The Caregiver-Lotsa Helping Hands: Makes it easy for each person to know what to do and when for anyone who wants to help
- Care Partners Tips for managing a loved one’s care, navigating a relationship with a Parkinson’s diagnosis and making time to care for oneself.
Additional Parkinson’s Online Support Groups
- Patients Like Me
- Caregiver-Online
- Northern and Central California
- Neurotalk
- Parkinson’s Mexico
- Parkinson’s New Zealand
- Parkinson’s Movement
- LGBT Community Support for Families and Friends
Clinical Trials
- Clinical Trials 101
- Improving Clinical Trials
- Addressing Clinical Trial Obstacles
- Locating Clinical Trials
- Clinical Trial Database
- Connect Directly To Researchers A secure registry to make it easier for the public to volunteer and become involved in clinical research studies
- National Institute of Health A registry of clinical studies conducted mostly in Bethesda, MD
- The Parkinson’s Spectrum Disorders Center: Understanding a Complex Set of Disorders
General Resources
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