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What Does It Feel Like To Have Parkinson’s

Causes Of Parkinson’s Disease

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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.

Depression Sometimes Comes Even Before Other Symptoms

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.

How Is Parkinson’s Disease Diagnosed

Someone with the symptoms of Parkinson’s disease may be sent to see a neurologist, a doctor who specializes in the brain, nerves, and muscles. The neurologist may do some tests, including a brain scan and blood tests. These tests will not make the diagnosis of Parkinson’s disease, but the doctor will want to make sure that there is no other problem causing the symptoms. To diagnose Parkinson’s disease, the doctor relies on a person’s medical history, symptoms, and a physical exam.

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How Nutrition And Gi Health Can Help Minimize Off Times

Another important step in minimizing OFF is to understand what causes it to begin with. When you understand the science behind Parkinsons OFF, you can use this knowledge to your advantage and get the most out of your Parkinsons medications.

When it comes to nutrition, three key aspects to keep in mind are hydration, protein, and fiber.


For your levodopa to make its way from your mouth to your brain, it must travel from your mouth to your stomach to your small intestine, then to your blood-brain barrier, then to your brain. There, the levodopa is metabolized to produce dopamine. The more quickly levodopa reaches the small intestine, the faster it passes through the intestinal walls, the faster it reaches your brain, the faster its converted to dopamine, and the faster you feel ON. The longer levodopa stays in your stomach, the longer you may feel OFF.

One key strategy for preventing delayed and partial ON times is to take your levodopa on an empty stomach with a full glass of water. The water flushes the medicine quickly to the small intestine, and the absence of food in your stomach means nothing can slow its emptying.


Protein interactions with levodopa have been found to cause all four types of OFF periods. To maximize your ON times, avoid protein when you take your levodopa and talk to your doctor about how dietary changes can help you get the most from your medications.


What Are The Surgical Treatments For Parkinsons Disease

How to Describe Parkinson

Most patients with Parkinsons disease can maintain a good quality of life with medications. However, as the disease worsens, medications may no longer be effective in some patients. In these patients, the effectiveness of medications becomes unpredictable reducing symptoms during on periods and no longer controlling symptoms during off periods, which usually occur when the medication is wearing off and just before the next dose is to be taken. Sometimes these variations can be managed with changes in medications. However, sometimes they cant. Based on the type and severity of your symptoms, the failure of adjustments in your medications, the decline in your quality of life and your overall health, your doctor may discuss some of the available surgical options.

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Embarrassing Symptoms Of Parkinson’s Disease

Some symptoms that may occur in people with Parkinsons disease are not typical of it and so people noticing them may misunderstand them. These symptoms can be particularly embarrassing in social situations where other people witness their discomfort. They distress some people so much that they avoid company other than close friends or family. Most of these symptoms are caused by Parkinsons but some are side effects of the medicines used to treat it. All the symptoms tend to fluctuate in relation to the medication, and some people had learnt to adjust their medicine regime to minimise these effects.

Eating can cause embarrassment in several ways. Both tremor and dyskinesia affect the physical job of cutting up food and directing it into the mouth . Several people had a problem with a piece of steak or chicken that might fly off the plate as they tried to cut it up, or they had a choking fit if they unwisely took too big a piece into their mouth. Humphrey disliked eating out with friends because he tended to drop things.

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 .

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.

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Parkinsons Symptoms Are Not Necessarily The Same Every Single Day

Like most chronic illnesses, Parkinsons disease does not look exactly the same every day. One day you might feel more fatigue another day you might realize youre not moving as slowly as you were the previous week. If you experience these ups and downs, youre definitely not alone!

Blogger Linda Olson explained:

Parkinsons disease is an erratic partner of mine. Some days Im stiff and sore and anxious, on those days my mantra is, I can do this. Then for no reason at all, it lightens up for a while. I look forward to these gratitude days and make sure I share them with those around me.

Symptoms Of Parkinsons Disease

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Parkinson’s disease has four main symptoms:

  • Tremor in hands, arms, legs, jaw, or head
  • Stiffness of the limbs and trunk
  • Slowness of movement
  • Impaired balance and coordination, sometimes leading to falls

Other symptoms may include depression and other emotional changes difficulty swallowing, chewing, and speaking urinary problems or constipation skin problems and sleep disruptions.

Symptoms of Parkinsons and the rate of progression differ among individuals. Sometimes people dismiss early symptoms of Parkinson’s as the effects of normal aging. In most cases, there are no medical tests to definitively detect the disease, so it can be difficult to diagnose accurately.

Early symptoms of Parkinson’s disease are subtle and occur gradually. For example, affected people may feel mild tremors or have difficulty getting out of a chair. They may notice that they speak too softly, or that their handwriting is slow and looks cramped or small. Friends or family members may be the first to notice changes in someone with early Parkinson’s. They may see that the person’s face lacks expression and animation, or that the person does not move an arm or leg normally.

People with Parkinson’s often develop a parkinsonian gait that includes a tendency to lean forward, small quick steps as if hurrying forward, and reduced swinging of the arms. They also may have trouble initiating or continuing movement.

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Other Typical Symptoms Of Parkinson’s

Tremor is an uncontrollable movement that affects a part of the body. A Parkinsons tremor typically starts in the hand before spreading to affect the rest of the arm, or down to the foot on the same side of the body.

There is no cure for a tremor, but there are ways to manage the symptom with support from a specialist or Parkinsons nurse.

Slowness of movement also known as bradykinesia may mean that it takes someone with Parkinson’s longer to do things. For example, they might struggle with coordination, walking may become more like a shuffle or walking speed may slow down.

Everyday tasks, such as paying for items at a check-out or walking to a bus stop, might take longer to do.

Parkinsons causes stiff muscles, inflexibility and cramps. This can make certain tasks such as writing, doing up buttons or tying shoe laces, hard to do. Rigidity can stop muscles from stretching and relaxing. It can be particularly noticeable, for example, if you struggle to turn over or get in and out of bed.

Symptoms and the rate at which they develop will vary from person to person. The most important thing to do if youre worried you have Parkinsons is to speak to your GP.

I Used To Be Like The Energizer Bunny

I could go and go and go. No more. I may go but its a much slower pace. I feel sluggish. I feel like my body is a bottle and Parkinsons is the cork and Ive got so much left to do, but I cant get out.

I am tired. I am weary. Fear whispers lies and hopelessness into my soul, leaving me scared and afraid.

People think Im drunk. If they only knew that the medication that seeks to bring reprieve is the culprit that leaves me vulnerable to wrong impressions and false assumptions.

What once brought me joy can now bring sorrow if I choose. I used to stop and smell the flowers but no more. The Little Monster took the sense of smell from me, too. But what once made me gag dirty diapers, feed lots does no more.

I may get frustrated over issues associated with this disease such as incontinence, constipation, irritable bowel syndrome, choking, fatigue, inability to write legibly, tripping or I can choose to lift my masked face upward, refuse to let it weigh me down and keep walking forward one step, one shuffle, one moment at a time and never forgetting Gods got this.

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What Is And Isn’t Parkinson’s Disease

I am often asked if Parkinson’s Disease is a form of Alzheimers. Parkinson’s is not Alzheimers, ALS or a brain tumor, and the prognosis for Parkinson’s, though not a perfect scenario, leaves room to live a productive life.

PD is a progressive and chronic neurological disease that often begins with mild symptoms that advance gradually over time. Symptoms can be so subtle in the early stages that they go unnoticed, leaving the disease undiagnosed for years. For patients with Parkinson’s, there is a reduction in the body chemical dopamine, which controls movement and mood so simple activities like walking, talking and writing can be impacted.

Due to the complexity of PD, diagnosis is based on a variety of factors. The best diagnosis is made by an expert doing a careful history and exam followed by tracking responses to therapy. There is no blood or laboratory test to diagnose Parkinson’s disease.

While Parkinson’s reaches all demographics, the majority of people with PD are age 60 or older. Men and people with a family history of the disease have an increased risk.

What Lifestyle Changes Can I Make To Ease Parkinsons Symptoms

What It Feels Like to Live With Parkinsons

Exercise: Exercise helps improve muscle strength, balance, coordination, flexibility, and tremor. It is also strongly believed to improve memory, thinking and reduce the risk of falls and decrease anxiety and depression. One study in persons with Parkinsons disease showed that 2.5 hours of exercise per week resulted in improved ability to move and a slower decline in quality of life compared to those who didnt exercise or didnt start until later in the course of their disease. Some exercises to consider include strengthening or resistance training, stretching exercises or aerobics . All types of exercise are helpful.

Eat a healthy, balanced diet: This is not only good for your general health but can ease some of the non-movement related symptoms of Parkinsons, such as constipation. Eating foods high in fiber in particular can relieve constipation. The Mediterranean diet is one example of a healthy diet.

Preventing falls and maintaining balance: Falls are a frequent complication of Parkinson’s. While you can do many things to reduce your risk of falling, the two most important are: 1) to work with your doctor to ensure that your treatments whether medicines or deep brain stimulation are optimal and 2) to consult with a physical therapist who can assess your walking and balance. The physical therapist is the expert when it comes to recommending assistive devices or exercise to improve safety and preventing falls.

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Dont give up.

At times, not giving up is easier said than done, especially when you feel alone and abandoned. You may feel your friends and family have abandoned you, but its often more a case of them not understanding your new journey. Its probably best to give those people in your life a free forgiveness pass and move on as you make new friends in the PD community who truly understand what living with PD is like.

Parkinsons disease causes grief, but we can choose to live joyfully and intentionally in spite of what we feel has been taken from us. It is not a death sentence, and we must learn to readjust to our new life. And a new life brings new opportunities. As one person said, never lose hope and keep the faith because God is doing miracles every day and you may be the one He is working through to accomplish just that.

Parkinsons Affects Younger People Too

Its true that the average age of diagnosis is 60. However, young onset Parkinsons disease occurs in people younger than 50, and affects 2 to 10 percent of the one million people with Parkinsons disease in the U.S.

As Nikki Louiselle, blogger at Just Shake It Off, explained:

Unless you live with Parkinsons disease you most likely see it as an old persons disease. I did, until I heard those devastating words. Until I received my diagnosis 17 months ago, I thought it was something old people had. Im 46.

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Medication Not Working The Way It Used To

In the early stages, taking medicine works well to get rid of symptoms. But as Parkinsons progresses, your medication works for shorter periods of time, and symptoms return more easily. Your doctor will need to change your prescription.

Dr. Valerie Rundle-Gonzalez, a Texas-based neurologist, says to pay attention to how long your medicine takes to kick in and when it stops working. She says you should feel like symptoms significantly improve or are almost gone while on medication.

What It Feels Like To Have Parkinsons Disease

An inside look at Young Onset Parkinson’s Disease (YOPD)

from Shutterstock

In 1985, science journalist Jon Palfreman investigated a group of drug addicts who were struck with Parkinsonâs-like symptoms after taking tainted heroin.

Thirty years later, Palfreman was diagnosed with Parkinsonâs disease himself. His book, “Brain Storms,” describes his journey with the disease and new treatments for patients.

âInitially I denied and sought second opinions. I got pretty angry. I tried to keep it secret for a while, just like Michael J. Fox did,â Palfreman says, âIt took me, Iâd say, about a year before I really processed it properly and then I realized that I had a destiny to use my training as a science journalist and my insights as a patient to explore this malady, which was now going to be part of my life.â

About 60,000 people each year in the US alone are diagnosed with Parkinson’s disease. Palfreman says the malady means many things that he used to do automatically, now come with much more difficulty.

âIt is very much like getting on a plane and going to London and renting a car. You can drive on the left-hand side of the road, but you have to use your conscious brain to pay attention. Everything’s a bit harder. When I walk, I have to sort of consciously move my arms back and forth. Whereas, when a healthy person does it, it’s automatic. And so a lot of things that you got for free you have to work at,â Palfreman says.

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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.

Some One Who Has Pd Has Likened It To Wearing A Leaded Body Suit

You have the will to get where youre going or do what you want to do but your body is determined to get you there by the slowest means possible , while exerting the most energy you have. Its as if your life has switched to slow motion and everything takes so much longer. You expect to look into the mirror and see the likeness of a 70 year old and yet, youre only 42. Life can be hard.

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