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Parkinson’s Disease and Parkinson’s Dementia

Managing Symptoms, Getting Support, and Coping with Parkinson’s

Parkinson's disease

A diagnosis of Parkinson’s disease can be devastating for both you and your family. You may be worried about what the future will bring and how you will manage. If you’re at risk for Parkinson’s dementia, that brings further anxieties and concerns. But no matter your situation or stage of the disease, there are many things you and your loved ones can do to reduce stress, manage your symptoms, help maintain your independence, and continue to have a fulfilling life.

What you can do

  1. Learn about the signs and symptoms of Parkinson’s disease and dementia
  2. Reach out and connect face-to-face with supportive family and friends
  3. Keep yourself as active as possible—avoid being a couch potato
  4. Learn a new skill—learning stimulates brain growth
  5. Invest in activities that make you feel needed and important
  6. Learn more by reading related articles

What are the signs and symptoms of Parkinson’s disease?

Parkinson's disease is a progressive disorder of the central nervous system resulting from nerve cells in the brain not producing enough of the chemical dopamine, which regulates movement. It develops gradually, often starting on one side of the body as a slight tremor in one hand, for example. As the disorder progresses, the trembling may spread to both sides of the body and be accompanied by other symptoms such as muscle stiffness, slowing of movement, and deterioration in balance and coordination.

Most of the symptoms of Parkinson’s disease involve the disruption of motor functions (muscle and movement). However, lack of energy, pain, and changes to mood and memory can also occur as part of the disease. And some people with Parkinson's will eventually experience dementia as their disease progresses, including loss of memory and other cognitive functions.

Symptoms of Parkinson's disease

When it comes to Parkinson’s disease, your symptoms and the way you deal with them are unique to you. Not everyone experiences all the symptoms—even the most common ones like tremors—and the way the disease progresses also varies greatly from person to person

As you will likely find, your symptoms will change throughout the course of your life, and even from day to day! That’s why it’s important to pay attention to how you’re feeling. Have you noticed any new physical or emotional symptoms? Is stress setting things off? How is your body responding to new treatments and therapies? Jot down changes you notice and discuss them with your doctor. The sooner you take steps to manage symptoms as they develop, the better chance you have of maintaining your quality of life.

Primary symptoms of Parkinson's disease

Tremors, or shaking, often occur in the hands, fingers, forearms, feet, mouth, or chin. Typically, the tremor appears (or gets worse) when your limbs are at rest as opposed to when you’re moving. Some people notice that their tremor is exacerbated by stress and excitement.

Slowed movement. You may find that your ability to move freely and spontaneously is reduced or slowed down. Repetitive movements can be especially difficult, causing problems with everyday tasks like buttoning a shirt, brushing your teeth, or cutting food. You may start to walk with short, shuffling steps, or your feet may start to drag.

Rigidity, or muscle stiffness, may occur in any part of your body (but most commonly in the neck, shoulders, and legs). This can limit your range of motion and cause muscle pain that gets worse when you move.

Poor balance, or the tendency to be unstable when standing upright, is one of the most important signs of Parkinson’s. It happens because of the loss of reflexes needed for maintaining posture. Some people develop a tendency to sway backwards when standing or turning, which can result in backwards falls.

Secondary symptoms of Parkinson’s disease

In addition to the major symptoms of Parkinson’s, there are many secondary motor symptoms associated with the disease. Again, not everyone with Parkinson’s will necessarily develop all or even any of these symptoms.

Secondary symptoms of Parkinson's disease
Motor symptoms:

Freezing when walking. Usually, this occurs when you’re taking the first step.

Small, cramped handwriting that gets worse the more you write

A less expressive face. People may comment that you look serious or mad. You may also have a blank stare or blink your eyes less often.

Speech may become slow, whispery, or slurred.

Trouble chewing or swallowing, drooling and excess saliva.

Non-motor symptoms:

Emotional changes such as anxiety, depression, and fear

Fatigue and loss of energy

Loss of sense of smell

Constipation

Sleep problems, including waking up frequently during the night or suddenly falling asleep during the day.

Parkinson's dementia: signs and symptoms

In many cases, Parkinson’s disease doesn’t affect your ability to think, learn, and remember. But some people do go on to develop Parkinson’s dementia. When that happens, there is usually at least a 10- to 15-year lag time between the Parkinson’s diagnosis and the onset of dementia.

Who is at risk for Parkinson’s dementia?

  • Parkinson’s patients who experience hallucinations, excessive daytime sleepiness, and more severe motor control problems are at higher risk for dementia.
  • Dementia is more common in people who are older (70+) at onset of Parkinson’s.
  • Dementia is a bigger risk factor in non-tremor predominant Parkinson’s.
  • Dementia is relatively rare in people who developed Parkinson’s before age 50, no matter how long they have the disease.

Common signs and symptoms of Parkinson's dementia

  • Poor memory and concentration
  • Slowed thinking
  • Disorientation and confusion
  • Delusions and paranoia
  • Lack of motvation
  • Trouble interpreting visual information
  • Problems with planning and decision making
  • Moodiness, irritability, and anxiety
  • Depression
  • Visual hallucinations

Is the dementia caused by Parkinson’s or something else?

If you’ve noticed some of the above signs and symptoms of Parkinson’s dementia in yourself or a loved one, it’s important to get them checked out. But don’t jump to conclusions. People with Parkinson’s often experience cognitive changes such as anxiety, lack of motivation, and slowed thinking. These symptoms do not automatically mean dementia.

Indications that dementia may be caused by something other than Parkinson’s

If the onset of cognitive symptoms is sudden, they’re more likely due to something other than Parkinson’s disease—even reversible causes such as infection, a vitamin B12 deficiency, or an underactive thyroid gland.

It’s also important to screen for depression, which is very common in Parkinson’s patients and can mimic dementia by causing similar symptoms such as apathy, memory problems, and concentration difficulties.

Parkinson's disease dementia vs. other dementias

Lewy Body Dementia is similar to Parkinson's disease dementia, characterized by fluctuations in alertness and attention, recurrent visual hallucinations, and Parkinsonian motor symptoms like rigidity and the loss of spontaneous movement. In this disorder, cognitive problems such as hallucinations tend to occur much earlier in the course of the disease and often precede the difficulties with walking and motor control. See Lewy Body Dementia

Alzheimer's disease and Parkinson’s disease are both common in the elderly, especially in those over 85, so it’s important to be aware of the signs of Alzheimer’s dementia. See Alzheimer's Disease

The similarities in symptoms between Parkinson’s disease, Lewy Body Dementia, and Alzheimer’s disease, can make it difficult to determine the cause of the symptoms. Thus, obtaining a thorough consultation with a neurologist may be necessary to make a definitive diagnosis and establish an appropriate plan of care.

Coping with Parkinson's disease or Parkinson's dementia

A diagnosis of Parkinson's can be a frightening experience for both you and your loved ones. While there is currently no cure, there are treatments available for Parkinson's symptoms and lifestyle changes you can make to slow the progression of the disease and delay the onset of more debilitating symptoms. Early diagnosis can prolong independence and help you to live life fully for much longer.

If you’ve been diagnosed with Parkinson’s you may feel anger, deep sadness, or fear about what the future will bring. These feelings are all normal.

Give yourself some time to adjust. As with any major change in life, don’t expect that you will smoothly snap into this new transition. You may feel alright for a while, and then suddenly feel stressed and overwhelmed again. Take time to adjust to this new transition.

Reach out for support. Living with Parkinson's presents a challenge, but there is help for this journey. The more you reach out to others and get support, the more you’ll be able to cope with symptoms while continuing to enrich and find meaning in your life.

Steps you can take to relieve stress and feel better

Unchecked stress takes a heavy toll on the brain, shrinking a key memory area, hampering nerve cell growth, and worsening symptoms. There is a great deal that you can do to relieve stress and improve the quality of your life. Healthy lifestyle choices and changes will not only make you feel better emotionally but slow the progression of the disease.

Even with a diagnosis of Alzheimer's disease, there is a great deal that you can do to slow its progress. The same healthy lifestyle changes and mental stimulation techniques that are used to prevent Alzheimer’s and other forms of dementia can also be effective in slowing the progression of the disease.

  • Get moving. Regular exercise stimulates the brain's ability to maintain old connections, make new ones, and slow deterioration in those who have already started to develop cognitive problems.
  • Social engagement. The more you connect face-to-face with others, the stronger you’ll be able to keep your memory and cognition.
  • Healthy diet. Eating a brain-healthy diet can help reduce inflammation, protect neurons, and promote better communication between brain cells.
  • Mental stimulation. By continuing to learn new things and challenge your brain, you can strengthen your cognitive skills and stay mentally active longer.
  • Quality sleep. Getting quality sleep can flush out brain toxins and avoid the build-up of damaging plaques.

The critical importance of staying active

Staying active is one of the most important things you can do to maintain your health and quality of life after a Parkinson’s diagnosis. And the sooner you start, the better. Regular exercise or physical activity can significantly slow the progression of the disease. It can also ease symptoms you’re already experiencing, such as muscle stiffness, posture changes, balance problems, and movement difficulties.

That’s on top of the powerful mental and emotional benefits of exercise. Even small amounts of physical activity can add up to big decreases in depression, anxiety, and stress. The key is to make it a regular part of your routine.

Pay attention to your body. The symptoms of Parkinson’s often fluctuate through the day, so plan your active time around them. You may also find that certain types of exercise work better for you and your symptoms, so experiment. Most importantly, pick something you enjoy so you’ll stick with it.

Take regular “movement breaks.” As getting around and doing things becomes more difficult, it’s only natural to move less, but inactivity makes symptoms worse. Remind yourself to get up—or, at the very least, change position—at least once every hour. And try to avoid too much time sitting in front of the TV, computer, or reading.

See a physical therapist, if possible. Before starting a new exercise regimen, you should always check with your doctor to make sure it’s safe. But for personalized guidance, go to a physical therapist. They can recommend specific exercises and activities tailored to your needs.

Exercise tips for people with Parkinson’s disease

  • Regular bending, stretching, and breathing exercises can help you combat posture and balance problems.
  • If you’re having trouble or pain while exercising on the floor, try exercising in bed. There are also many chair exercises that can help.
  • Don’t underestimate the benefits of walking. It’s convenient and effective. If you’re having trouble, try using a cane or holding onto something (or someone) as you walk.
  • Try exercising in the water; it’s easier on the joints. Many fitness centers, hospitals, colleges, and YMCA’s or YWCA’s offer water exercise programs.
  • Don’t forget to exercise your face and jaw (sing, read out loud, make exaggerated faces in the mirror). This will help with your facial expressions.

Social engagement: the most effective way your brain has of relieving stress

Human beings are highly social creatures. We don’t thrive in isolation, and neither do our brains. Staying socially engaged stimulates immune function that may slow the progress of disease. This is why it's so important to make it a priority to develop and maintain a strong social network.

You don’t need to be a social butterfly or the life of the party, but you do need to regularly connect face-to-face with someone who cares about you and makes you feel heard. While many of us become more isolated as we get older, it’s never too late to meet others and develop new friendships:

  • Volunteer
  • Join a club or social group
  • Visit your local community center or senior center
  • Take group classes (such as at the gym or a community college)
  • Reach out over the phone or email
  • Connect to others via social networks such as Facebook
  • Get to know your neighbors
  • Make a weekly date with friends
  • Get out (go to the movies, the park, museums, and other public places)

What—and how—you eat can make a difference

There’s no specific Parkinson’s disease diet, but by adjusting your eating habits, you can help reduce inflammation and protect your brain. Cut down on sugary foods and refined carbs, reduce fried and processed foods, and boost your intake of healthy fats and home-cooked meals.

For more information on healthy eating...

See: Healthy Eating: Tips for Planning, Enjoying, and Sticking to a Healthy Diet

Eating nutritiously will help you stay healthy and feel your best. However, many people with Parkinson’s experience various eating and dietary problems, such as constipation, chewing and swallowing difficulties, and upset stomach. The following tips can help you minimize the symptoms.

If you suffer from constipation… Drink lots of water and eat fiber-rich foods, including beans, brown rice, whole grains, and fruit.

If you have trouble chewing or swallowing food… Cut foods into smaller portions to avoid choking and to encourage digestion, and remain upright for 30 minutes after eating.

If you’re struggling with fatigue… Limit the amount of sugar you’re eating. Also avoid alcohol and caffeine, especially before bed, as they can reduce the quality of your sleep.

If you take levodopa (Sinemet)… Don’t eat meat or other protein-rich foods for at least 30-60 minutes after taking levodopa, as protein blocks your body’s ability to absorb the medication.

If your medication gives you an upset stomach… Take your medication with a full glass of water and a small non-protein based snack, such as a piece of toast or fruit.

Some Parkinson’s disease medications need to be taken promptly at specified times before or after eating, so it can also help to establish a regular routine for meal and medication times.

More self-help for coping with Parkinson’s disease

Adopting these additional self-help strategies and lifestyle changes may help improve symptoms and make living with Parkinson's disease easier.

Self-help tips

Find ways to contribute or give back. A key ingredient in living well after a Parkinson’s diagnosis is your continuing ability to invest in things that you care about and give your life meaning and purpose. Having something to live for and remain active energizes the nervous and immune systems. Continuing with those efforts that meet these needs or adding new ways to invest yourself gives you an emotional cause preserve your health. You might consider investing in a volunteer cause, your grandkids, your religious community or even caring for your pets—anything that makes you feel needed and fulfilled.

Nourish your spirit. Do things every day that add joy to your life. Everyone experiences pleasure differently. It could be taking up a new or long-neglected hobby, spending time in nature, enjoying the arts, playing with grandkids or pets.

Learn something new. Another great way to improve brain function is to learn a new skill, whether it’s a musical instrument, a foreign language, a new computer program, or a new game or sport. Classes at community centers or colleges can help you to tackle new subjects.

Get enough quality sleep. Good sleep is important for flushing out toxins and protecting your brain. Most adults need 7 to 9 hours. Establish a regular sleep schedule, create relaxing bedtime rituals such as taking a bath or doing some light stretches, and turn off all screens at least one hour before sleep.

Reduce stress further by learning additional stress reduction techniques. Stress can make many Parkinson’s disease symptoms worse, so it’s important to use relaxation techniques, such as meditation, and other ways to manage stress.

Don’t ignore depression

As many as 50 percent of people with Parkinson’s disease struggle with depression at some point, which can seriously impact health. So if you suspect that you’re depressed (or that your loved one is), it’s important to seek help. Receiving treatment for depression can make it easier to handle the other challenges of Parkinson's disease. There’s a lot you can do to change how you feel, boost your outlook on life, and improve your overall vitality and well-being. See: Depression in Older Adults

Caring for someone with Parkinson’s

Caring for someone with Parkinson's disease or dementia can be a rewarding as well as challenging experience. It will likely involve adapting to new challenges over time as the disease progresses or new symptoms emerge.

Become informed. Learn as much as you can about Parkinson’s disease and how it is likely to affect your loved one specifically, given his or her health history, age, and lifestyle.

Communicate openly and provide reassurance, especially in the early stages following diagnosis, that Parkinson’s disease is only slowly progressive in most patients, does not shorten life expectancy, and that your loved one can still live a full life.

Modify tasks to allow for greater independence. Allow your loved one to do things for him- or herself even if it takes longer. If necessary, break tasks that involve fine motor skills into easier steps and focus on success, not failure.

Help your loved one find alternative means of transport if he or she has to give up driving. That may involve researching public transportation, ride sharing, or community shuttle services.

Exercise together. Exercising is vital for the health and state of mind—of both of you. Take a class together or simply enjoy a walk outside.

Look after yourself. Take regular breaks to avoid caregiver burnout, maintain social ties, and seek out opportunities to relax and have fun. Talking to others in similar situations can be very helpful.

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Resources and references

What is Parkinson's Disease? – Provides information about Parkinson's disease, current events, publication and video, fellowships and grants. (American Parkinson's Disease Association)

Medline Plus: Parkinson's Disease – A resource list of online articles and publications about Parkinson's including links to information about current research, specific medication and treatment regimens, support organizations and general information. (National Library of Medicine / National Institutes of Health)

Dementia and Parkinson's (PDF) – A brief information sheet covering Parkinson’s disease and dementia. (Parkinson’s Australia)

Parkinson's Diagnosis Questions – Answers key questions on how to deal with a diagnosis of Parkinson’s disease. Site also offers many other resources for those with Parkinson’s and their loved ones. (The Michael J. Fox Foundation)

Support for Parkinson’s disease

Support in the US – Find care centers, support groups, and other resources in the US. (National Parkinson Foundation)

Support in Your Area of the UK – Offers a directory of support groups in the UK and a helpline 0808 800 0303. (Parkinson’s UK)

Parkinson's Australia – Offers links to state organizations that provide support and services. (Parkinson’s Australia)

Parkinson Society of Canada – Regional offices provide resources and support in Canada. (Parkinson Society Canada)

Caring for someone with Parkinson’s disease

Caring for Someone with PD – Tips on early-, mid-, and late-stage caregiving. (National Parkinson Foundation)

Caring for Someone with Parkinson's – Offers guidance for caring for someone with Parkinson’s disease or Parkinson’s disease dementia. (Parkinson’s UK)

Authors: Jeanne Segal Ph.D., Melinda Smith M.A., and Lawrence Robinson. Last updated: December 2016.