Parkinson’s Disease Myths

Parkinson’s Disease Myths

 

Image result for Parkinson's Disease Facts

 

If you or someone close to you has recently been diagnosed with Parkinson’s disease (PD), you are likely experiencing many emotions and have many concerns and questions.

 

Remember that you are not alone. As many as one million people in the US and an estimated seven to 10 million worldwide live with Parkinson’s disease. These estimates do not account for cases of PD that are unreported, undiagnosed or misdiagnosed.

With a diagnosis now in hand and the freedom to learn at your own pace, you can begin to understand PD and its treatments and the role they will play in your life. Your diagnosis can be the first step to taking charge of your life with Parkinson’s disease. 

There are many pervasive myths and misconceptions about Parkinson’s disease (PD) and its treatment.

Below are some tips to help you distinguish between fact and fiction so that you can optimize both your care and quality of life.

 

 

 

 

 Myth/Misconception

PD only affects movement. Most people – including some physicians – believe that PD only causes movement-related (motor) symptoms such as tremor, stiffness and slowness.

 

Reality

Many symptoms of PD are unrelated to movement. Nonmotor (“invisible symptoms”) of PD are common, and may affect everyday life more than the more obvious movement difficulties. These symptoms may include impaired sense of smell, sleep disorders, cognitive symptoms, constipation, bladder symptoms, sweating, sexual dysfunction, fatigue, pain (particularly in a limb), tingling, lightheadedness, anxiety and depression.

 

Secret

Good news: many nonmotor symptoms of PD are highly treatable. For this reason, you should write down your invisible symptoms, discuss them with your doctors, and seek treatment.

 

 

 

Myth/Misconception

If someone with Parkinson’s looks good, then they also feel good. People will often assume that if someone with PD looks good at one point in time, then they will feel well all of the time.

 

Reality

PD symptoms fluctuate, and not all of them are visible. Over time, people with PD notice an increasing tendency for their medications to wear off between doses. For this reason, the way that they appear at one moment may not reflect the way that they feel most of the time. Even when someone with Parkinson’s looks good, they may not feel well because of nonmotor symptoms.

 

Secret

Keeping a symptom diary can help. If your symptoms fluctuate during the day, then you should keep track of your pattern of “on” times (when your medications work effectively) and “off” times (when medications wear off). This will enable your doctor to optimize your medications, and help you feel more in control of your PD.

 

 

 

Myth/Misconception

You can blame PD for everything. It is easy for you – and for your doctors – to blame PD every time that you are not feeling well.

 

Reality

Certain symptoms should never be attributed to PD. Fever, for example, is not a symptom of PD, and usually indicates an infection. Headache, vision loss, vertigo, loss of sensation, loss of muscle strength and chest pain are not symptoms of PD.

 

Secret

Your doctors should rule out other causes for your symptoms. Sudden-onset symptoms – such as chest pain, shortness of breath, weakness, difficulty with speech, or vertigo – warrant immediate medical attention to rule out an emergency.

 

 

 

Myth/Misconception

PD has spontaneous “exacerbations.” Another common assumption is that PD can “flare up” unexpectedly. But PD does not work this way. Although symptoms may fluctuate throughout the day, the progression of PD is very slow.

 

Reality

If PD symptoms worsen over days or weeks, then it is critical to search for an underlying cause. Medication changes, infection, dehydration, sleep deprivation, recent surgery, stress, or other medical problems can worsen PD symptoms. Urinary tract infections (even without bladder symptoms) are a particularly common cause.

 

Secret

Certain medications can worsen PD symptoms. These include antipsychotics, valproic acid (Depakote®) lithium, and nausea medications such as prochlorperazine (Compazine®), metoclopramide (Reglan®) and promethazine (Phenergan®). Speak with your neurologist before starting one of these medications, to see if there is a better alternative.

 

 

 

 

Myth/Misconception

Levodopa stops working after five years. This is perhaps the single most pervasive myth about PD treatment. Many people are reluctant to start taking levodopa because of fear of “using it up.” Some physicians also share this “levodopa phobia.”

 

Reality

Levodopa works for decades. Levodopa does not treat all of the symptoms of PD, but it dramatically helps many of the most disabling motor symptoms.

 

Secret

Levodopa has been shown to increase lifespan and markedly improve quality of life.

 

 

 

 

Myth/Misconception

You should wait as long as possible to take the next dose of levodopa. Many people feel that they should wait until their medication has completely worn off before taking the next dose.

 

Reality

Levodopa is most effective when taken on time, just before the previous dose wears off. If you wait too long, then the next dose may never “kick in,” and the medications may not work effectively for the rest of the day.

 

Secret

A medication timer can help. If you are experiencing wearing off of medications, then it is critical to take your doses exactly on time.

 

 

 

Myth/Misconception

Different generic brands of carbidopa/levodopa are usually different colors.

 

Reality

The color of carbidopa/levodopa tablets is relatively consistent between brands. If the color of your tablets changes for no apparent reason, then it is important to verify that you are still receiving the correct dosage.

 

Secret

The most commonly described dosage of carbidopa/levodopa – 25/100 mg immediate-release tablets – is always yellow in color, regardless of the brand. If you are supposed to take this dose, and your pills are not yellow, than an error has occurred.

 

 

 

Myth/Misconception

Your doctor can predict your future. Many people with PD ask their doctor to predict their prognosis.

 

Reality

PD is highly variable from person to person. Even a PD expert has no way of knowing what the future holds for an individual with PD.

 

Secret

You can help to change your future. You can improve your disease at every stage by ensuring that you stay fit and receive adequate sleep and proper nutrition. Exercise is particularly important for improving mobility, stamina, mood and quality of life.

 

 

 


Recommended Reading:

Here is a marvelous guide for anyone affected by Parkinson’s disease–patients, caregivers, family members, and friends.

Containing the most up-to-date information on the disease, one of the most common neurological disorders, it discusses the available treatments and provides practical advice on how to manage the disease in the long term.

Emphasizing life-style adjustments that will provide a better quality of life and moderate the burden for patients and their loved ones, the book answers many questions and clarifies misunderstandings regarding the disease.

Written by two experts on Parkinson’s disease and a freelance journalist, the book is approachable and easily understandable. Question and answer sections are provided, while “hot topics” are highlighted for easy visibility. The authors have also included true patient stories that will both inspire and instruct, and they have addressed several topics often not mentioned in physician-directed disease management, such as how to talk to family and friends about one’s life with Parkinson’s.

Over 100 Customer Reviews

 

 

Thanks for visiting and reading … I hope this article provided you some helpful ideas.  I welcome your comments below.

-Laurie

 

 

 

 

You may also be interested in:

Planning Ahead for Parkinson’s Needs

Best Exercises for Parkinson’s Disease – A Complete Physical Activity Guide

New Spoon for Hand Tremors Helps at Mealtime

Caregiving for Parkinson’s Disease

Parkinson’s Swallowing and Dental Problems

Parkinson’s Disease and Low Blood Pressure

Getting the Right Testing for Dementia

About Me

Create Your Own Blog

 

Brain Disease Swallowing Problems

 

Brain Disease Swallowing Problems

 

 

http://www.advanceweb.com/SharedResources/Images/2011/091911/SP091911_cover1_300x.jpg

 

Swallowing problems in degenerative brain diseases

People who have degenerative brain diseases, such as Alzheimer’s, other dementias, Parkinson’s disease and Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease), often develop swallowing problems (dysphagia) as their disease progresses. This is because the degeneration of the nerves and their complex connections often spreads throughout a person’s nervous system.

 

Why does swallowing become a problem?

We take swallowing for granted until we have trouble doing it. Most of us have experienced an episode of choking when food or fluids enter the trachea (windpipe). This is called aspiration, and our lungs respond with a fit of coughing to clear our airway.

Swallowing is a complex action that requires the sensory and motor parts of our brain to work together. When we eat and drink, the brain senses food and fluids in our mouth, moves them safely into the esophagus, and protects the trachea at the same time. Food or fluid then moves down the esophagus into the stomach. Swallowing requires 40 muscles working together with both the sensory and motor parts of the brain. A degenerative brain disease can affect a person’s ability to swallow in different ways, depending on which parts of the brain are affected and how quickly the disease progresses.

 

Swallowing problems are serious

When swallowing begins to fail, it signals that a person’s degenerative brain disease is at an advanced or life-threatening stage. Serious infections (pneumonia and lung abscess) develop in the lungs when food and fluids are aspirated into the airways. Almost half of patients with dementia who develop “aspiration pneumonia” will die within the next six months. 

Oral or intravenous antibiotics may cure pneumonia, but the more frequently infections occur, the more likely antibiotics will be ineffective. This is because the person is repeatedly aspirating either food and fluids or saliva, which is an indication that the disease is progressing. In order to clear pneumonia, antibiotics need the help of an effective cough and a strong immune system, both of which are lacking in this phase of illness. Also, with each infection, the person becomes weaker and can harbor more resistant organisms. Complications such as a C. difficile infection in the bowel can arise from repeated courses of antibiotics.

 

How can the risk of infection be reduced?

To reduce the risk of aspiration, a speech language pathologist (speech therapist) or occupational therapist with training in this area first conducts a swallowing assessment. Once the specific swallowing problem is identified, the pathologist or therapist recommends strategies for preventing aspiration.

 

 

Ensuring that the person is awake, sitting upright and concentrating on eating or drinking is essential for reducing the risk of aspiration regardless of the swallowing problem. Avoiding foods that are particularly difficult to swallow can prevent choking.

Changing the texture of other foods (for example, by mincing or pureeing) and thickening fluids can make them easier to swallow safely.

Try Thick-It Instant Food and Beverage Thickener

 

Thick-It 36 OZ
Feeding a person in this way has been called “feeding at risk” but a better name for it is “careful hand feeding.”

Despite these measures and vigilant feeding by family or staff in a facility, aspiration and infection can still occur. This is because swallowing problems worsen over time and a person’s chest muscles become too weak to cough. As a result, he or she cannot expel fluid or food, and the airway is unprotected. When this occurs, it is called “silent aspiration.” Saliva too can be aspirated, and bacteria in the mouth can cause infections in the lungs.

 

Is a feeding tube helpful?

Recurring infections and more trouble swallowing signal advanced degenerative brain disease. Often by this stage, the person is no longer able to understand his or her medical issues. Family members are often asked to step in to decide whether their loved one would accept a feeding tube.


 

What is a feeding tube?

A temporary feeding tube is passed through the nose and into the stomach. Rarely is a temporary tube used for more than a few days, because it is uncomfortable and easily pulled out. 

 

 

A long-term feeding tube called a PEG tube (percutaneous gastrostomy tube) is surgically inserted. A scope is passed through the mouth and into the stomach. It presses the stomach against the abdominal wall and a tube is passed from outside the patient’s body into the stomach.

With PEG tubes, there is a one-in-ten chance of painful ulcers, infection or tube leakage at the abdominal wall. There is a three-in-a-hundred chance of severe complications, such as serious bleeding, perforation of the bowel, secondary pneumonia, or breakdown of the abdominal wall.

 

How effective are feeding tubes?

Many family members feel a feeding tube may prolong life, improve its quality, and possibly reverse their loved one’s degenerative brain disease. However, multiple studies show that people who have degenerative brain diseases do not live any longer with a feeding tube than a similar group of people who are fed carefully by hand. Studies also show that a feeding tube does not reduce the risk of aspiration. It is still possible to aspirate saliva and develop a serious pneumonia. 

The progressive weakness related to degenerative brain disease isn’t because of lack of intake. It is the outcome of the natural progression of the illness. The tube does not affect the progression of the disease nor does it improve a person’s quality of life. 

Many family members want a feeding tube for their loved one because they do not wish him or her to feel hunger. However, a person’s desire to eat lessens as end of life approaches. As well, many people with advanced degenerative brain diseases are not very active. They do not need as many calories as they did when they were mobile.

See End of Life Nutrition

 

Complications

While the feeding tube can get food safely to a person’s stomach, it cannot prevent aspiration of saliva into the lungs. As well, the feeding tube cannot prevent aspiration of food into the lungs if the person has gastric reflux (food passing from the stomach back into the esophagus because of a leaky stomach valve). 

 

Advantages of careful hand feeding

 

 

 

Careful hand feeding has many advantages over tube feeding. It allows the person to still experience the taste of food and interact with others. Preserving these important parts of eating may result in a higher quality of life for a loved one. Careful hand feeding reduces the use of medications needed to treat the discomfort of the tube.

 

 

Careful hand feeding is the simplest and most satisfying way for a person to continue eating. The recommended approach is small amounts of favorite foods. If the person refuses food, then basic mouth care is offered.

 

 

How do you make the best decisions?

Dealing with complex decisions in advanced disease can be very stressful for the family. So it is important for family members to support each other through these times.

It also is not uncommon for family members to have differing opinions about what is best for their loved one. This is when it is essential for family members to focus on what they believe their loved one would prefer rather than on what they would wish to see happen. The health care team can help support families through these difficult conversations.

Decisions at this time are best made with the health care team and family working together. The health care team can explain the options available for a loved one, given his or her stage of illness. The health care team can also outline what is and isn’t medically possible and appropriate. The family can give insight into what their loved one would prefer if he or she were able to speak for themselves.

Adapted from an article by Romayne Gallagher MD, CCFP

 

Recommended Reading:

The Dying Process – A Hospice Social Worker’s Perspective On End Of Life Care: A helpful guide for coping and closure during end of life care

The Dying Process – A Hospice Social Worker’s Perspective On End Of Life Care provides a detailed exploration of issues pertaining to patient and family grief reactions, the duration and preparation for death, closure support needs, understanding pain, pain management and avenues to create a positive death experience for both the patient and family.

Over a decade of work in the hospice field, author and social worker, Dana Plish offers professional insight regarding his experiences with patients and families who are in the dying process.

 He elaborates on the process of death which impacts family coping, patient and family closure, barriers to acceptance, and examines negative and positive death processes. He concludes with ways in which family can aid the patient during life to death transition and support ongoing bereavement and grief needs. Dana comments on patient grief related to the loss of pets and supporting patient closure with their pets when possible.

Dana has worked in the social services field for 30 years and he presents the subject matter in a simple, easy to read and understand format which serves as a practical guide for anyone who has a loved one in the dying process.

 

 

Thanks for visiting and reading …

I hope this article provided you some helpful ideas.  I welcome your comments below.

-Laurie

 

 

 

You may also be interested in:

End of Life Nutrition

Make a Living Will/Health Care Directive

Dying Process – Dehydration

Planning Ahead for Parkinson’s Needs

Best Exercises for Parkinson’s Disease – A Complete Physical Activity Guide

New Spoon for Hand Tremors Helps at Mealtime

Caregiving for Parkinson’s Disease

Parkinson’s Swallowing and Dental Problems

Parkinson’s Disease and Low Blood Pressure

Parkinson’s Disease Myths – Know the Facts!

About Me

Create Your Own Blog