Understanding Parkinson’s Disease Progression: From Early Signs to Advanced Symptoms
Parkinson’s disease (PD) is a progressive disorder of the nervous system. It primarily affects movement but can also lead to other symptoms, significantly impacting quality of life over time.
Signs of PD start slow but become more frequent and intense as the disease progresses. It's important for both patient and caregiver to know the stages of PD and how it progresses in order to know what to expect and how to plan for any necessary lifestyle changes before symptoms worsen. But PD and its progression are complex, and not everyone has the same experience. How PD progresses can vary with each person, and the journey is often unpredictable.
In this article, we’ll explore the stages of PD and its symptoms. We’ll also discuss how to slow down PD progression and where to find support.
In 1967, two neurologists named Hoehn and Yahr came up with a five-stage scale to describe PD according to the level of physical disability. Doctors use this scale to understand a person's motor symptoms and mobility. Stage 1 is early PD, 2 to 3 are mid-stage, and 4 to 5 are advanced.
Stage 1: Mild Symptoms
In this initial stage, you may experience mild symptoms such as tremors or slight rigidity to your movements. You may see changes in your facial expressions, posture, and walking.
These symptoms are usually confined to one side of the body. Although they’re noticeable, they generally don’t interfere with your day-to-day life.
Stage 2: Bilateral Symptoms, Minimal Disability
As PD progresses to stage 2, your symptoms may extend to both sides of the body. You will still be able to maintain your daily activities and live alone, but it may take longer than usual to do the things you used to.
People who have stage 2 PD usually don’t have any balance problems but may experience minimal disability, such as stiffness when walking and poor posture.
Stage 3: More Significant Disability, Balance Impairment
With stage 3 comes a worsening of motor symptoms, such as balance issues and moderate disabilities. Falls are more common. You may need to adjust your living environment to safeguard against falls.
Stage 4: Severe Disability, Assistive Devices Needed
In stage 4, the symptoms are more profound, with severe disability. Individuals can still stand and walk but may need a walker or cane for safety and to help with balancing. They may need help from others as daily activities become more challenging, and will be unable to live alone.
At this stage, people with PD may start feeling a lack of independence as their need for care increases.
Stage 5: Advanced, Wheelchair-Bound or Bedridden
In the final stage, people with PD can experience significant stiffness in their legs, and they are unable to walk or stand up. They will need to use a wheelchair or be bedridden.
At this stage, people will need around-the-clock care.
The Hoehn and Yahr scale has some limitations. For example, it looks only at motor symptoms, but there are many nonmotor symptoms of PD, including mood disorders and cognitive and psychiatric changes. Understanding these other symptoms is crucial for doctors to give the best care to people with PD.
PD progression includes both motor and nonmotor symptoms. Motor symptoms refer to those that affect mobility and movement, such as balance and walking. Nonmotor symptoms include everything else, such as sleep, mood changes, and the cognitive ability to understand, remember, and apply information.
Early Signs of Parkinson’s Disease
Parkinson’s disease often begins with subtle early signs and symptoms that can be mild and easy to overlook.
Your limbs may feel stiff, and simple movements, like getting out of a chair, take more energy than usual. Handwriting feels slow and small. If you look at a mirror, you may notice fewer facial movements and expressions, or that you’re naturally leaning forward more than usual.
Early signs include:
Minor Tremors For many people, the first noticeable symptom of PD is a tremor in one limb, especially at rest. It’s usually noticed in one of the hands. But not all patients will develop a tremor early on, and some never develop a tremor at all.
Slower Movements (Bradykinesia) Movements become slower, making everyday tasks a little more time-consuming. This affects both your voluntary motions, such as when you reach for a glass, and your automatic movements, such as blinking or moving your arms while walking.
Rigidity You might notice that your movements are not as smooth as they used to be. As a result, you may feel like your feet are stuck to the floor, and it takes more energy to lift them. Stiffness in your wrists and fingers can lead to slower and smaller handwriting.
Sleep Disturbances Movement during sleep is normal, especially in the early and light stages of sleep. But sudden movement during deep sleep or acting out dreams could indicate PD.
Samer Tabbal, MD, a board-certified neurologist and the director of the movement disorders program at Miami Neuroscience Institute in Miami, says that early diagnosis of PD doesn’t affect progression. If someone has mild symptoms, doctors may avoid giving them medications to reduce the risk of side effects. But the earlier someone with moderate to severe symptoms gets diagnosed, the better doctors can help manage symptoms.
Parkinson’s Tremor Progression
Tremors are the most common and visible sign of PD. Up to 90 percent of people with PD experience tremors, and they’re slightly more common in those who are older. People with PD who don’t have tremors tend to have a faster progression of the disease than those who have resting tremor.
In PD, the typical type of tremor is a resting tremor. This means that the tremor is noticeable when that body part is at rest and not moving, but isn’t very noticeable or even goes away completely when that limb is being used. For example, you might not have tremors when picking up a bag or shaking someone’s hand, but they start again when you’re sitting or standing still, or when holding a spoon or fork to the mouth.
In the early stages of PD, there are sometimes slight, occasional tremors on one side of the body, usually the hands. They can also appear in the leg or jaw. As the disease progresses, the tremors become more pronounced. They’re more frequent, affect both sides of the body, and look more like shaking instead of slight movements.
The tremors can become constant and intense in the late stages of PD. Most people experience shaking that interferes with their lives, especially when they try to do anything that requires fine motor skills, such as writing, tying shoelaces, or shaving.
While it may be possible to hide nonmotor symptoms, tremors can be very visible, and may push people with PD away from social situations.
Claire Henchcliffe, MD, a neurologist at UCI Health and the Stanley van den Noort Professor and Chair of the department of neurology at the University of California in Irvine, says that this, together with the inability to practice certain sports or hobbies because of the tremors — such as playing the guitar — can lead to depression and added anxiety. Around family and friends, the lack of independence can suddenly feel like a burden, which may alienate people with PD even more, she says.
Advanced Parkinson’s Symptoms
As PD progresses into the later stages, symptoms become severe.
Typical advanced motor symptoms include freezing and severe tremors. Freezing refers to the sudden inability to move. It is temporary but can greatly affect an individual’s independence. The tremors that were once mild are now constant, affecting both sides of the body.
Both freezing and severe tremors can pose a danger. It becomes much easier to lose balance and fall.
Speech and swallowing can also become more erratic. Dysphagia, or swallowing difficulty, starts mildly with the person coughing at times during a meal or taking longer than usual to eat. As PD progresses, it can become severe, leading to aspiration (accidental inhalation of food), dehydration, and malnutrition. Aspiration is the leading cause of death in people with PD.
Nonmotor symptoms also become more frequent. Mood disorders, particularly depression and anxiety, are common and have the greatest impact on overall health. Anxiety in PD is caused by both psychological and biological factors. Chemical changes in the brain caused by PD (low levels of chemicals called GABA, dopamine, serotonin, and norepinephrine) also cause anxiety and depression. The severity of the motor symptoms and dependence on family and friends also add to anxiety and depression.
Chemical changes in the brain can also worsen cognition. About 70 percent of people with PD develop dementia when PD progresses to advanced stages. Signs and symptoms include forgetting how to do simple tasks, becoming disoriented or confused, having problems with short- and long-term memory, having hallucinations or delusions, and having trouble comprehending sentences and speaking.
How people progress through the stages and symptoms of PD can differ significantly from one person to another, and it can be impossible to predict the timeline of how PD will progress for any person. Some people go through the stages in a few years, but for others, it can take decades for the disease to progress to advanced stages. Some people never progress beyond the mid-stage and instead get another health diagnosis that requires more attention.
Ro'ee Gilron, PhD, a lead neuroscientist at Rune Labs in San Francisco, says the following factors may affect the progression timeline:
Genetic Predispositions Those with a family history of PD and certain genetic mutations can have a higher risk and progression rate of PD.
Age of Onset People who get diagnosed at a younger age typically see more motor challenges but fewer cognitive symptoms compared with older people.
Environmental Exposures Exposure to toxic elements, including some pesticides and heavy metals, can lead to faster progression. Studies have shown that head trauma, such as injuries from contact sports, is linked to both the development and acceleration of PD symptoms.
Health and Lifestyle Regular coffee consumption and physical activity can slow motor symptoms and cognitive decline, while heavy alcohol consumption can accelerate progression, says Dr. Gilron. Smokers with PD may also experience faster cognitive decline.
Treatment Responsiveness People with PD who respond well to medications at low dosages can better manage their symptoms, potentially slowing down progression.
Scientists have studied various medications over the past 30 years to try to slow down or block PD, says Dr. Tabbal. “One of the hallmarks of PD pathology is the accumulation of alpha-synuclein protein in brain cells that eventually die,” says Tabbal, but so far, the studies on how to block this protein have failed.
While there is no cure for PD, treatments can help manage symptoms and improve quality of life. In some cases, these can potentially slow disease progression.
Medications for Parkinson’s Disease
People with PD have lower levels of dopamine, so most of the medications focus on increasing dopamine levels. These medications do not slow or stop disease progression, but they can help provide some relief from symptoms:
Levodopa Levodopa is a natural chemical that goes into the brain and gets converted to dopamine. It’s a common medication that can be taken in various ways, including orally and by inhalation. It’s combined with another medication, carbidopa, to help levodopa reach the brain and to reduce side effects like nausea. Other side effects include lightheadedness and involuntary movements. Levodopa can become ineffective over time.
Dopamine Agonists Dopamine agonists work by mimicking the dopamine effects in the brain. They also come in different forms, including patches and injections. Dopamine agonists last longer than levodopa but aren’t as effective. Side effects include nausea, hallucinations, and compulsive behaviors like gambling and hypersexuality.
Monoamine oxidase B (MAO B) Inhibitors and Catechol O-methyltransferase (COMT) Inhibitors MAO B inhibitors and COMT inhibitors help increase dopamine activity by stopping enzymes that break down dopamine. Doctors usually prescribe them in combination with levodopa to make them more effective. Common side effects include nausea, headaches, and vomiting. MAO B inhibitors shouldn’t be taken with pain and antidepressant medications, so make sure to speak with your doctor about other medications you’re taking.
Physical Therapy for Parkinson’s Disease
Studies show that moderate to vigorous cardiovascular exercise can slow disease progression — in some patients, for up to a year. Physical therapy exercises that focus on flexibility, balance, and muscle strength, can help reduce the risk of falls or injury should you fall. It can also help improve motor symptoms, mood, anxiety, and depression.
Other helpful integrative therapies include:
Massage This can help reduce muscle tension and promote relaxation.
Tai Chi This ancient Chinese exercise incorporates slow movement to increase flexibility and muscle strength.
YogaManyyoga poses can help strengthen muscles and improve flexibility and balance.
Relaxation Techniques Controlled breathing, meditation, and self-hypnosis can help reduce anxiety, stress, and your heart rate.
If you need help with daily activities, you may want to speak with an occupational therapist. They can show you new ways to perform tasks such as cooking and bathing, especially if you have advanced motor symptoms. If you notice that your speech is changing or you have difficulty swallowing, a speech therapist can help.
Surgery for Advanced Parkinson’s Disease Symptoms
Surgery options include deep brain stimulation, Duopa, and MRI-guided focused ultrasound.
Deep Brain Stimulation
Deep brain stimulation involves implanting electrodes into specific areas of the brain and connecting them to an impulse generator battery (similar to a pacemaker) that is placed in the chest. This battery sends electrical pulses to the electrodes to significantly reduce both motor and nonmotor PD symptoms.
While deep brain stimulation is not a cure, it can improve quality of life. It’s most useful in people who respond well to levodopa but have movement disorders and disabling tremors.
Success rates can vary from person to person, but most people tend to see a good reduction in their symptoms and can reduce their medication. Risks are small but include infection, stroke, and brain hemorrhage.
Duopa
Duopa therapy involves a small surgery that delivers carbidopa-levodopa directly into the intestine as a gel instead of the typical pill. The idea is to improve the absorption and reduce the wearing-off times of levodopa.
The surgery involves making a small hole, called a stoma, in your abdomen to place a tube in the intestine. Then, a pump connects to the tube to deliver the drug. Candidates include those who respond well to levodopa but have motor issues that did not respond to other medications. Risks include infection, bleeding, and the side effects from levodopa.
MRI-Guided Focused Ultrasound
Doctors can use an MRI-guided ultrasound to reduce tremors and other involuntary muscle movements if they become too frequent and intense.
MRI is used to guide the ultrasound to specific areas of the brain. The ultrasound then uses heated energy to destroy the area of the brain that generates tumors without damaging surrounding tissue. Side effects may include speech and walking problems and new involuntary muscle movements.
Lifestyle Changes for Parkinson’s Disease
Certain foods can help reduce PD symptoms. For example, drinking more water and eating fiber-rich foods can reduce constipation. Nutrients like omega-3 fatty acids may help reduce the risk and symptoms of PD, although research is limited.
Reducing excessive consumption of omega-6 fatty acids may help reduce the risk of neurodegenerative diseases like PD. You can reduce omega-6 levels by cooking with fats with a lower omega-6 to omega-3 ratio, like olive oil or coconut oil, instead of seed oils like corn and safflower, which have a high omega-6 to omega-3 ratio.
Exercise also helps, reducing stress while improving coordination, strength, and flexibility. The exercise routines and intensity will depend on the severity of your symptoms. At early stages of PD, you may be able to perform vigorous weight and aerobic training. As PD progresses, you may need to switch to slower but more frequent exercises, such as yoga, stretching, walking, and swimming.
Support groups and counseling services can help people with PD and their caregivers cope with the challenges of living with PD. These groups offer the opportunity to share experiences, advice, coping strategies, and encouragement. Professional counseling can also help manage nonmotor challenges such as depression.
You can ask your doctor for a referral to local support groups or visit the following organizations:
Parkinson’s Foundation offers education and resources on PD, including a podcast and a wide network of local support groups. You can search by zip code to find local groups and events.
The Michael J. Fox Foundation provides education, webinars, podcasts, blogs, and events for individuals with PD and their families. You can also join their Parkinson’s Buddy Network, an online community of people affected by PD. The foundation also gives information on how to participate in research studies.
American Parkinson’s Disease Association provides support, education, and research to help the PD community. You can visit their resource library, attend virtual exercise classes and other events, and connect with other PD families through a local chapter.
Each person’s experience with Parkinson’s disease (PD) is different, with a range of symptoms and progression timelines. Knowing the signs and symptoms of PD progression can help patients and their caregivers adjust and prepare for the future.
There are many treatment options and integrative therapies available to help reduce symptoms and improve quality of life, potentially slowing PD progression.
Consider joining a support network, which provides a safe place to ask questions, share experiences, and connect with other families going through similar challenges.
