Saturday, February 17, 2024

What Does It Feel Like To Have Parkinson’s Disease

How Is Parkinsons Diagnosed

What It Feels Like

Doctors use your medical history and physical examination to diagnose Parkinson’s disease . No blood test, brain scan or other test can be used to make a definitive diagnosis of PD.

Researchers believe that in most people, Parkinson’s is caused by a combination of environmental and genetic factors. Certain environmental exposures, such as pesticides and head injury, are associated with an increased risk of PD. Still, most people have no clear exposure that doctors can point to as a straightforward cause. The same goes for genetics. Certain genetic mutations are linked to an increased risk of PD. But in the vast majority of people, Parkinsons is not directly related to a single genetic mutation. Learning more about the genetics of Parkinsons is one of our best chances to understand more about the disease and discover how to slow or stop its progression.

Aging is the greatest risk factor for Parkinsons, and the average age at diagnosis is 60. Still, some people get PD at 40 or younger.

Men are diagnosed with Parkinsons at a higher rate than women and whites more than other races. Researchers are studying these disparities to understand more about the disease and health care access and to improve inclusivity across care and research.

Aging is the greatest risk factor for Parkinsons, and the average age at diagnosis is 60. Still, some people get PD at 40 or younger.

The Michael J. Fox Foundation has made finding a test for Parkinsons disease one of our top priorities.

What Causes Parkinson’s Disease

Parkinson’s disease occurs when nerve cells, or neurons, in an area of the brain that controls movement become impaired and/or die. Normally, these neurons produce an important brain chemical known as dopamine. When the neurons die or become impaired, they produce less dopamine, which causes the movement problems of Parkinson’s. Scientists still do not know what causes cells that produce dopamine to die.

People with Parkinson’s also lose the nerve endings that produce norepinephrine, the main chemical messenger of the sympathetic nervous system, which controls many functions of the body, such as heart rate and blood pressure. The loss of norepinephrine might help explain some of the non-movement features of Parkinson’s, such as fatigue, irregular blood pressure, decreased movement of food through the digestive tract, and sudden drop in blood pressure when a person stands up from a sitting or lying-down position.

Many brain cells of people with Parkinson’s contain Lewy bodies, unusual clumps of the protein alpha-synuclein. Scientists are trying to better understand the normal and abnormal functions of alpha-synuclein and its relationship to genetic mutations that impact Parkinsons disease and Lewy body dementia.

How Do I Prevent Falls From Common Hazards

  • Floors: Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its usual place.
  • Bathroom: Install grab bars and non-skid tape in the tub or shower. Use non-skid bath mats on the floor or install wall-to-wall carpeting.
  • Lighting: Make sure halls, stairways, and entrances are well-lit. Install a night light in your bathroom or hallway and staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
  • Kitchen: Install non-skid rubber mats near the sink and stove. Clean spills immediately.
  • Stairs: Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it might be helpful to arrange most of your activities on the lower level to reduce the number of times you must climb the stairs.
  • Entrances and doorways: Install metal handles on the walls adjacent to the doorknobs of all doors to make it more secure as you travel through the doorway.

Recommended Reading: Iowa Parkinson’s Disease Association

Symptoms Of Parkinson’s Disease

The symptoms of Parkinson’s disease usually develop gradually and are mild at first.

There are many different symptoms associated with Parkinson’s disease. Some of the more common symptoms are described below.

However, the order in which these develop and their severity is different for each individual. It’s unlikely that a person with Parkinson’s disease would experience all or most of these.

Early Symptoms Of Parkinson’s Can Be Overlooked


Symptoms of Parkinson’s disease are divided into 2 groups: motor symptoms and non-motor symptoms.

Early non-motor symptoms can be subtle and it’s possible to overlook them as signs of Parkinson’s: for example, anxiety and depression, fatigue, loss of smell, speech problems, difficulty sleeping, erectile dysfunction, incontinence and constipation. Another sign of Parkinson’s is handwriting that becomes smaller.

Motor symptoms of Parkinson’s can include tremor , slowness of movement , muscle rigidity and instability .

It’s possible for non-motor symptoms to start occurring up to a decade before any motor symptoms emerge. Years can pass before symptoms are obvious enough to make a person to go to the doctor.

There’s no ‘one size fits all’ when it comes to Parkinson’s disease different people will experience different symptoms, and of varying severity. One in 3 people, for example, won’t experience tremor.

On average, 37 people are diagnosed with Parkinson’s every day in Australia. Parkinson’s Australia

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How Is Parkinsons Disease Diagnosed

Diagnosing Parkinsons disease is sometimes difficult, since early symptoms can mimic other disorders and there are no specific blood or other laboratory tests to diagnose the disease. Imaging tests, such as CT or MRI scans, may be used to rule out other disorders that cause similar symptoms.

To diagnose Parkinsons disease, you will be asked about your medical history and family history of neurologic disorders as well as your current symptoms, medications and possible exposure to toxins. Your doctor will look for signs of tremor and muscle rigidity, watch you walk, check your posture and coordination and look for slowness of movement.

If you think you may have Parkinsons disease, you should probably see a neurologist, preferably a movement disorders-trained neurologist. The treatment decisions made early in the illness can affect the long-term success of the treatment.

Parkinsons May Be Invisible But That Doesnt Mean Its Not There

Like many chronic illnesses, Parkinsons may not always cause obvious symptoms. However, just because there are times when other people cant see your symptoms, that doesnt mean youre not still feeling painful, uncomfortable symptoms, mental health challenges like anxiety and depression, or dealing with the stress of communicating with insurance companies or getting accommodations from work. Invisible doesnt mean easy!

Parkinsons is an invisible disease and the majority of people dont get that. Its a disease that may not look like much of anything to some people, but if youve got it, you had better believe its something indeed, Woodbridge said.

Read Also: Emotional Symptoms Of Parkinson’s

What Is It Like To Have Parkinsons Disease

You have Parkinsons disease . If someone were to observe you, what would they see that is attributed to having Parkinsons disease? What wouldnt they see that is attributed to having this disease?

I have culminated the answers from a very un-scientific study, the questions above posed to over 1,500 people with Parkinsons disease.

This is not my story. This is the story of all those who live with Parkinsons disease, in order to show what it can be like for those who daily live with this debilitating disease.

Who Gets Parkinson’s Disease

Early Stage Parkinson’s

About 1 million people in the United States have Parkinson’s disease, and both men and women can get it. Symptoms usually appear when someone is older than 50 and it becomes more common as people get older.

Many people wonder if you’re more likely to get Parkinson’s disease if you have a relative who has it. Although the role that heredity plays isn’t completely understood, we do know that if a close relative like a parent, brother, or sister has Parkinson’s, there is a greater chance of developing the disease. But Parkinson’s disease is not contagious. You can’t get it by simply being around someone who has it.

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Where To Get More Information

  • If you’re experiencing any symptoms and are concerned, see your GP.
  • To learn more about Parkinson’s disease and to find support, visit Parkinson’s Australia or call the Info Line on 1800 644 189.
  • The Shake It Up Australia Foundation partners with The Michael J. Fox Foundation to help raise awareness and funds for Parkinson’s disease research.
  • The Garvan Institute of Medical Research is working hard to find ways to diagnose Parkinson’s earlier and repurpose existing drugs to slow its progress. Find out more here.

What Are The Primary Motor Symptoms Of Parkinsons Disease

There are four primary motor symptoms of Parkinsons disease: tremor, rigidity, bradykinesia and postural instability . Observing two or more of these symptoms is the main way that physicians diagnose Parkinsons.

It is important to know that not all of these symptoms must be present for a diagnosis of Parkinsons disease to be considered. In fact, younger people may only notice one or two of these motor symptoms, especially in the early stages of the disease. Not everyone with Parkinsons disease has a tremor, nor is a tremor proof of Parkinsons. If you suspect Parkinsons, see a neurologist or movement disorders specialist.




Postural Instability

Walking or Gait Difficulties


Vocal Symptoms

Read Also: Signs Of Parkinson’s Disease

Why Is Expert Care Important

Early expert care can help reduce PD complications. Findings show that 60 percent of people with Parkinson’s fall short of getting the expert care they need. The National Parkinson Foundation has estimated that about 6,400 people with Parkinson’s die unnecessarily each year due to poor care.

Trained neurologists will help you recognize, treat and manage the disease. Common approaches include medication, surgical treatment, lifestyle modifications , physical therapy, support groups, occupational therapy and speech therapy. The best approach is interdisciplinary care, where you are seen by multiple specialists on a regular basis and all of the specialists talk and arrange the best possible coordinated care. This is what is referred to as a patient-centric approach to Parkinson’s care.

You Have A Name For Your Symptoms

Researchers Days: What it feels like to have Parkinsons ...

You just won a name for your symptoms. That’s one of three differences between yesterday and the avalanche that is today’s diagnosis. There is no difference in your health other than what took you to the doctor in the first place. Those new changes won’t come overnight, and neither did those changes. Enjoy your life as well as you can. No timelines.

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Its My Body But Im Not In Control

People are telling me to speak up, quit mumbling, talk louder. I am speaking up. Im not mumbling. I am talking louder.

There, I say. Im yelling now! Is that better?!? They say they can now hear me now. Just barely. Maybe they have potatoes in their ears.

Hey, they say, whats wrong? Why ya so down?

Let me check. I didnt think I was down. I didnt think anything was wrong.

What makes you think theres something wrong?

Youre not smiling.

Oh thats Parkinsons. It took my smile and gave back a mask with a frown instead. But Im smiling on the inside. Does that count?

I barely slept last night. I awoke screaming from the nightmares that plague me in the dark hours. Its so hard to get back into position in order to sleep again. I roll to the left and you remember that leaded body suit I had? Well, it followed me into bed and what takes you a mere second to do, takes me 3-5 minutes, for rolling over is one of the hardest things to do and if I happen to be in pain most impossible.

The pain can be pins and needles.

The pain can be a sharp knife being twisted in my back

The pain can come suddenly, gripping my hands, my calves, my feet, my anything.

The pain can be stiffness and/or rigidity.

The pain can be my muscles.

The pain can be my joints, my toes.

The pain can be isolation.

The pain can be sorrow.

The pain can be grief.

Causes Of Parkinson’s Disease

Parkinson’s disease is caused by a loss of nerve cells in part of the brain called the substantia nigra. This leads to a reduction in a chemical called dopamine in the brain.

Dopamine plays a vital role in regulating the movement of the body. A reduction in dopamine is responsible for many of the symptoms of Parkinson’s disease.

Exactly what causes the loss of nerve cells is unclear. Most experts think that a combination of genetic and environmental factors is responsible.

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The 2016 Edition Of The Researchers Days Organised By The Fnr Attracted A Large Audience That Took Part In Fascinating Scientific Experiments And Had The Opportunity To Mingle With The Present Researchers The Luxembourg Parkinson Study Was Of Course There Too With A Booth Called What Parkinsons Disease Feels Like We Took A Closer Look

In order to see how Parkinsons disease feels like, hundreds of visitors tried on a Parkinson suit which simulates the two most representative motor symptoms of Parkinsons disease: the muscle rigidity and the tremors. At first glance, the suit looks like a race car drivers outfit. But together with the elbow and knee bands, and the ankle, wrist and chest weights, this suit shows how rigid the muscles and articulations can be, and how difficult it is for Parkinsons disease patients to move.

Depression Sometimes Comes Even Before Other Symptoms

This Device Lets You Feel The Effects Of Parkinson’s Disease | CNBC

Not everyone with depression will get Parkinsons and vice versa, but it is common for depression to be among the very first symptoms of the disease to show up.

Sherri Woodbridge, blogger at Parkinsons Journey, explained how this depression feels:

One of the first symptoms that is often overlooked can be depression. By the time you are actually diagnosed, you may feel like your whole world has caved in and your diagnosis adds a thousand ton weight upon you as you lay smothered in a pit of grief.

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You’re Going To Learn A Lot About Parkinson’s

You’re going to learn a lot about this disease. Buckle up. Nevertheless, you’re going to want to acclimate before you go in too deep of water or stay in too long. Moderation. Don’t go to the final stages when you’re in slight tremors. The only thing you can expect there is pain you may never experience. Don’t cross bridges until you have to or are ready to.

Exercise And Healthy Eating

Regular exercise is particularly important in helping relieve muscle stiffness, improving your mood, and relieving stress.

There are many activities you can do to help keep yourself fit, ranging from more active sports like tennis and cycling, to less strenuous activities such as walking, gardening and yoga.

You should also try to eat a balanced diet containing all the food groups to give your body the nutrition it needs to stay healthy.

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Signs Of Parkinsons Disease

In 1817, Dr. James Parkinson published An Essay on the Shaking Palsy describing non-motor, as well as, motor symptoms of the illness that bears his name. Parkinsons is not just a movement disorder, explained Dr. Shprecher. Constipation, impaired sense of smell, and dream enactment can occur years before motor symptoms of Parkinsons. The latter, caused by a condition called REM sleep behavior disorder, is a very strong risk factor for both Parkinsons and dementia . This has prompted us to join a consortium of centers studying REM sleep behavior disorder.

What Makes Pd Hard To Predict

What does it feel like to have Parkinsons? Part 2 ...

Parkinsonâs comes with two main buckets of possible symptoms. One affects your ability to move and leads to motor issues like tremors and rigid muscles. The other bucket has non-motor symptoms, like pain, loss of smell, and dementia.

You may not get all the symptoms. And you canât predict how bad theyâll be, or how fast theyâll get worse. One person may have slight tremors but severe dementia. Another might have major tremors but no issues with thinking or memory. And someone else may have severe symptoms all around.

On top of that, the drugs that treat Parkinsonâs work better for some people than others. All that adds up to a disease thatâs very hard to predict.

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Who Is Prone To Parkinson’s Disease

Some people are more to Parkinson?s disease than others. They include:

  • People who are of advanced age

  • Males are more likely to get Parkinson?s disease than females

  • People with a family history of Parkinson?s disease

  • Postmenopausal women who have very low levels of oestrogen

  • Women who have undergone hysterectomies

  • People who suffer from vitamin B deficiency

  • People who have suffered from head trauma

  • People who are frequently exposed to environmental toxins such as a pesticide or herbicide

When I First Began To Suspect Something Was Going On Inside Of Me I Felt Like My Insides Were Shaking All The Time

There is most likely as many people with Parkinsons who experience external tremors who experience internal tremors. You can have one, both, or neither and still have Parkinsons disease. Most people dont know about external tremors as you cant see them.

Some other symptoms of PD you will never see are having to deal with cognitive issues: failing memory, anxiety, feelings of apathy, and depression to name a few. Some of these issues dont occur because we are sad and blue about our predicament, but more than likely they are a symptom of the disease itself, not a reaction of how we are handling it.

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