Thursday, July 21, 2022

What Does It Feel Like To Have Parkinson’s

What Is And Isn’t Parkinson’s Disease

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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 Is Parkinsons Disease

Parkinsons disease is a nervous system disease that affects your ability to control movement. The disease usually starts out slowly and worsens over time. If you have Parkinsons disease, you may shake, have muscle stiffness, and have trouble walking and maintaining your balance and coordination. As the disease worsens, you may have trouble talking, sleeping, have mental and memory problems, experience behavioral changes and have other symptoms.

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.

Hydration

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

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.

Fiber

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Living With Parkinson’s Disease

As Parkinson’s develops, a person who has it may slow down and won’t be able to move or talk quickly. Sometimes, speech therapy and occupational therapy are needed. This may sound silly, but someone who has Parkinson’s disease may need to learn how to fall down safely.

If getting dressed is hard for a person with Parkinson’s, clothing with Velcro and elastic can be easier to use than buttons and zippers. The person also might need to have railings installed around the house to prevent falls.

If you know someone who has Parkinson’s disease, you can help by being a good friend.

Reaching Out To Friends For Help Doesnt Make You A Burden

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When youre first diagnosed, you might feel embarrassed or guilty about asking for help, worrying that youre burdening others. But the more you become accustomed to Parkinsons and realize how helpful it is when friends lend a hand . Theres no need to feel guilty for asking loved ones to support you, and any true friend will be glad to do it.

Parkinsons disease is a neurodegenerative disease that is slowly stealing many of my motor and cognitive skills. Friendship has become more precious as I learn to ask for and accept help more often, Olson said. And surprisingly, my friends are grateful when I ask for and accept their help.

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What It Feels Like To Live With Parkinsons

Two art directors explore how a diagnosis of Parkinsons disease has changed their worlds.

What It Feels Like to Live With Parkinsons

What It Feels Like to Live With Parkinsons

What It Feels Like to Live With Parkinsons

Steven Heller, 70, has lived with Parkinsons for more than 10 years. Véronique Vienne, 79, only recently learned that she had the disease. Both have had long careers as art directors, and the two have been friends for more than three decades. Back in March, the pair exchanged a flurry of emails over a 10-day period, where they explored the before and after of a Parkinsons diagnosis. Here is an edited version of their conversation.

Dear VV,

Dear VV,

Dear VV,

Now both of us are members of a club Id rather not belong to. What are the odds of two collaborators, like us, getting the same neurological disease?

You know, over 10 years ago I learned that I had Parkinsons disease. Whatever the cause, it was not welcome news. There is an upside, my first doctor smilingly told me, as he informed so many before me, you wont die from it. Something else will do that. Well, that was comforting.

I decided to seek a second opinion.

My new doctor said more or less the same but added: Dont try to self-diagnose from the internet. Wise advice: There are just too many nuances, and every PDer has their own peculiar symptoms.

What about you? When did you learn that you became a club member? And what are the dues you now pay?

Dear Steve,

Dear Steve,

Dear Steve,

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.

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How To Decide To Start Levodopa

The time may come when you have to decide whether to take levodopa. The main thing to think about is whether your Parkinsonâs is getting in the way of your normal life. Is it hard to exercise, do your job, socialize, or do daily tasks? If so, it may be time to start levodopa.

Here are some other things to keep in mind:

  • Not everyone may need or want to take medicine for Parkinsonâs, especially in the early stages. Talk to your doctor about exercise, physical and speech therapy, and other treatments that could help your symptoms.
  • Ask your doctor about other types of Parkinsonâs medicines. Options include a type of antidepressant called MAO-B inhibitors, dopamine agonists, anticholinergic agents, and COMT inhibitors. But these drugs donât work as well as levodopa and have side effects, too.
  • If you get dyskinesia, you and your doctor have a few treatment options. One is a medicine called amantadine . It might also help to lower your dose of levodopa or take it less often. Another is clozaril , a drug typically used to treat mood disorders. The trick is to take enough to control your Parkinson’s symptoms but not enough to cause dyskinesia. You could also try taking an extended-release form of levodopa. This type keeps the level of the drug in your body more constant, so it might keep your dopamine levels more even and keep dyskinesia at bay.

The Michael J. Fox Foundation for Parkinsonâs Research.

UptoDate: âParkinson disease treatment options â medications .â

Your Unique Off Experience

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Just like your Parkinsons symptoms are unique to you, your OFF times are as well. Some people equate OFF times to times when motor symptoms re-emerge, and they discount the non-motor symptoms that tend to be present more often than not during OFF times. So, theyre OFF, but they dont realize it. Some people with Parkinsons experience an increase in motor symptoms and believe its caused by the progression of Parkinsons rather than a result of their medication wearing off. They think, therefore, that theres nothing they can do about it. Some may choose not to share any discomfort theyre having with their care partners, friends, and/or healthcare providers because they dont want to be a burden or seem like theyre complaining. And, while some people may feel uncomfortable during OFF times, they fail to share their symptoms with anyone because they think it might be a sign that their Parkinsons is progressing, and they arent ready to face that. Refusing to talk about it, in this case, serves as a coping mechanism.

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How To Talk To Your Physician About On/off Periods

Even after youve taken time to notice, assess, and track what OFF feels like to you, communicating about your unique OFF experiences can still be challenging. One strategy to help is, as we explained above, taking a written tracker of your medication doses and symptom fluctuations throughout the day to all your physician appointments.

Another strategy is to have your care partner go with you to your appointments so your physician can get the full storythe one experienced by you as the person with Parkinsons and the one observed by your care partner.

Be proactive and speak up about your symptoms and any ON/OFF fluctuations you experience at all appointments. Never assume that your physician can guess what your symptoms are or that you even have them. Your appointment time with your doctor is limited, and unless they prompt you to discuss OFF in a specific way, you may miss some key information about your medication and how it is supposed to work. Take these questions with you the next time you go to get the conversation about OFF started.

  • How long should it take my medication to start working?
  • Should my medication be working the same throughout the day?
  • What should I do if my medication begins to wear OFF before my next dose?
  • What if I take a dose and nothing happens?
  • Can I take my medication when OFF symptoms occur, even if its not time for my next dose?

Walking Freezing And Falling

The dopamine in your brain is heavily involved in controlling the movement of your body. In Parkinsons, there are reduced levels of dopamine. For this reason the most obvious changes related to Parkinsons are normally those that affect your movement, including walking, falling, and freezing.

In particular, slowed movement, stiff muscles and changes to posture affect all people living with Parkinsons. These issues and others can lead to challenges with walking, freezing and falling.

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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.

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What It Feels Like to Live With Parkinsons

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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What Medications Are Used To Treat Parkinsons Disease

Medications are the main treatment method for patients with Parkinsons disease. Your doctor will work closely with you to develop a treatment plan best suited for you based on the severity of your disease at the time of diagnosis, side effects of the drug class and success or failure of symptom control of the medications you try.

Medications combat Parkinsons disease by:

  • Helping nerve cells in the brain make dopamine.
  • Mimicking the effects of dopamine in the brain.
  • Blocking an enzyme that breaks down dopamine in the brain.
  • Reducing some specific symptoms of Parkinsons disease.

Levodopa: Levodopa is a main treatment for the slowness of movement, tremor, and stiffness symptoms of Parkinsons disease. Nerve cells use levodopa to make dopamine, which replenishes the low amount found in the brain of persons with Parkinsons disease. Levodopa is usually taken with carbidopa to allow more levodopa to reach the brain and to prevent or reduce the nausea and vomiting, low blood pressure and other side effects of levodopa. Sinemet® is available in an immediate release formula and a long-acting, controlled release formula. Rytary® is a newer version of levodopa/carbidopa that is a longer-acting capsule. The newest addition is Inbrija®, which is inhaled levodopa. It is used by people already taking regular carbidopa/levodopa for when they have off episodes .

What It’s Like To Have Parkinson’s For 15 Minutes

By Sandrine Ceurstemont

Im at a close friends wedding, waiting to give a speech. Public speaking always makes me anxious, but today its worse than usual& colon my hand is shaking noticeably and I cant seem to make it stop. The loss of control is unnerving.

When I try to speak to a neighbour, my voice comes out in a whisper, even though it seems to take more effort. Soon, my upper arm feels tired. I tell myself I just need to relax and snap out of it. I pick up my spoon and fill it with soup, but this only makes the tremors more obvious, as the metal beats against the bowl.

For a moment, I have forgotten that Im immersed in an interactive installation called Transports, created by Liam Jarvis and his team from the Analogue theatre company.

It aims to simulate the physical and psychological effects of the early stages of Parkinsons disease by taking inspiration from body illusions, like the rubber hand trick, in which the brain accepts a fake limb as its own.

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Diagnosis Of Parkinsons Disease

A number of disorders can cause symptoms similar to those of Parkinson’s disease. People with Parkinson’s-like symptoms that result from other causes are sometimes said to have parkinsonism. While these disorders initially may be misdiagnosed as Parkinson’s, certain medical tests, as well as response to drug treatment, may help to distinguish them from Parkinson’s. Since many other diseases have similar features but require different treatments, it is important to make an exact diagnosis as soon as possible.

There are currently no blood or laboratory tests to diagnose nongenetic cases of Parkinson’s disease. Diagnosis is based on a person’s medical history and a neurological examination. Improvement after initiating medication is another important hallmark of Parkinson’s disease.

Medication Not Working The Way It Used To

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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.

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Electrodes To Simulate Tremors

Muscle rigidity is not the only symptom that visitors could experience at the booth. By placing electrodes on the forearm, one could feel first-hand the tremors that are so characteristic of Parkinsons disease. The tingling sensation coming from the electrodes is quickly translated to a significant tremor of the arm.

This made a simple action, such as moving a teaspoon of salt from a recipient to another, a difficult exercise. While this ended up covering the table cloth in salt and has caused quite some laughter among the younger visitors, it has also managed to make a lasting impression:

This is not really funny! Since we do not have Parkinsons disease, it is difficult to imagine what a patient goes through and how much the daily activities can be limited. The Parkinson suit and the electrodes allow us to be in the patients shoes.

Because the disease affects other parts of the body as well, the researchers also showed the test used in the study for other symptoms. The visitors could test their dexterity, their sense of smell and their colour vision, thus understanding how the brain controls the senses and the movements and why they are affected by Parkinsons disease.

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