Living With Early Onset Parkinsons
It was on a day much like today, an unexceptional, ordinary day, that three little words changed everything. They even changed who I was.
Pete Langman
- Story
Ten years ago, I sat in front of yet another neurologist, having lived in a state of suspended identity since being unofficially diagnosed a few weeks earlier. This was following a year of fruitless investigation into my complaints that my fingers werent right. I had been a professional guitar player, so was sensitive to change.
Today, however, it was the real deal. The tests were in. The consultation began with an explanation of the therapy the neurologist was going to start me on. So I definitely have Parkinsons? I said. Her reply? Oh, didnt I say?
Well, she said. You have Parkinsons. When finally uttered, those three words first expanded to fill all the available space in my head, and then the whole of my being. I was exactly the same person as I was when I walked into the consultation room but also totally different. No longer an individual with stiff shoulders and dodgy fingers, I was now a set of symptoms. I turned from person to patient in a flash.
Young Onset Vs Late Onset Parkinson’s Disease
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology.
Parkinson’s disease is a common neurodegenerative disorder that features a progressive deterioration of motor function due to a loss of dopamine-producing brain cells.
The symptoms of Parkinsons diseasetremors, stiffness, slowness, impaired balance, and a shuffling gate in later stages of the illnessstart gradually and typically begin after age 60.
While the average age of diagnosis is 62, roughly 10% of people with the condition start to experience symptoms under the age of 50, known as young-onset Parkinsons disease.
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Want To Learn More About The Latest Research In Parkinsons Disease Ask Your Questions In Our Research Forum
Stage 3As motor symptoms become worse, patients may begin to experience loss of balance leading to falls and movement can become very slow. Although many patients can still live independently they may have difficulty in everyday activities such as eating or dressing.
MORE: How does Parkinsons disease affect the brain?
Stage 4In this later stage, symptoms are now extremely limiting. Many patients can still stand without assistance but movement is greatly impaired. Most will need help with everyday activities and will not be able to look after themselves.
Stage 5This is the most advanced stage of the disease and most patients will experience difficulty in walking and standing, often requiring a wheelchair. Assistance will be needed in all areas of daily life as motor skills are seriously impaired. In addition, people with advanced Parkinsons disease may also begin to suffer hallucinations.
MORE: How Parkinsons disease affects your body.
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The Changing Map Of The Self
Parkinsons doesnt merely redraw us in the eyes of others it gradually erases our map of the self. It changes our voice, facial expressions, our movements, our senses: those physical attributes through which we once asserted ourselves. Its symptoms take up more and more of our time. Just as we appear as a manifestation of Parkinsons from the outside, so it gradually emerges from the inside. We watch ourselves as the shaking palsy becomes all people see in us, and in all that we do.
Eventually, we fall prey to a crushing sense of auto-alienation.
Today, I caught a glimpse of someone, in a shop window, with Parkinsons: I did not see me. And it hurt.
Parkinsons hangs over you like the sword of Damocles, gradually transforming everything. We can live perfectly well with it for years, keeping its worst effects at bay with exercise, medication and, often, sheer bloody-mindedness. But underneath, it creeps ever onwards. We know that, sooner or later, it will have its say.
Parkinsons Disease As A Result Of Paraquat Exposure
Parkinsons disease is only second to Alzheimers as the most common neurodegenerative condition in the country. As the dopaminergic neurons in the brain degenerate, so do a persons motor functions. This leaves the patient with physical challenges like:
- Limb rigidity and tremors
- Difficulty swallowing or speaking
- Challenges typing or writing by hand
Those suffering from Parkinsons disease can even experience non-motor symptoms, such as personality changes. Over time, the condition gets progressively worse, with disabling effects. You may have difficulty walking or communicating.
Despite being common, Parkinsons disease has no established cause. Genetic factors can contribute to your risk for Parkinsons disease, but only recent studies have shone a light on the possibility of environmental exposures like herbicides causing the condition.
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Learn The Protocol For Your State
Colorado is not a medically mandated state. Its a self-reporting state, which means its up to you to assess whether or not you are fit to drive. With that said, Dittmar says that approximately 75% of the driving assessments she does are direct referrals from doctors.
Once Dittmar has completed a driving assessment, she sends the report to the drivers doctor and it gets linked back to the drivers DMV profile. The recommendations then become connected to a license.
These recommendations must be measurable. For example, some of the restrictions that could be placed on a driver include:
- Can only drive in daylight
- Can only drive within a certain radius of their home
- Can only drive below certain speeds
In some states, the report gets sent to the medical board. Contact the DMV in your state to learn more about how its done where you live.
What You Need To Know About Paraquat Poisoning And Parkinsons
by Jordon Harlan | Mar 29, 2021
Have you been exposed to paraquat? The experienced legal team at Harlan Law is now accepting cases of paraquat users who have developed Parkinsons disease nationwide. Call 870-0802 now for your FREE consultation.
Paraquat is a toxic chemical commonly used as a herbicide to kill weeds and control grass. Although paraquat was developed as a chemical over 100 years ago, it only became commonly used as a herbicide in 1961.
Since then, paraquat continues to be used around the world. But the chemical is so dangerous that the United States has restricted its use to commercially licensed users only. China began phasing out paraquat use in 2012 to safeguard the lives of agricultural workers. England and the European Union have included paraquat on their banned substances list since 2007.
Paraquat is so poisonous that in the U.S. the liquid form contains a blue dye, a sharp odor, and a vomiting agent in case someone swallows it. A single spoonful could kill the average person. If consumed, paraquat can quickly cause dramatic symptoms within hours to days including heart, kidney, or liver failure. If inhaled, it can cause lung scarring. Paraquat can even cause injury if it comes in contact with exposed skin during application.
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Theory Of Pd Progression: Braaks Hypothesis
The current theory is that the earliest signs of Parkinson’s are found in the enteric nervous system, the medulla and the olfactory bulb, which controls sense of smell. Under this theory, Parkinson’s only progresses to the substantia nigra and cortex over time.
This theory is increasingly borne out by evidence that non-motor symptoms, such as a loss of sense of smell , sleep disorders and constipation may precede the motor features of the disease by several years. For this reason, researchers are increasingly focused on these non-motor symptoms to detect PD as early as possible and to look for ways to stop its progression.
Page reviewed by Dr. Ryan Barmore, Movement Disorders Fellow at the University of Florida, a Parkinsons Foundation Center of Excellence.
*Please note that not all content is available in both languages. If you are interested in receiving Spanish communications, we recommend selecting both” to stay best informed on the Foundation’s work and the latest in PD news.
The Plus Side Of An Early Diagnosis
The news is not nearly all bad for those with young-onset Parkinsons. For one thing, patients with YOPD are better candidates for surgical procedures and medical innovations being used or developed to treat Parkinsons disease. For another, younger patients are less likely to be coping with other health problems at the same time.
Targeting Parkinsons-Linked Protein Could Neutralize 2 of the Diseases Causes
Researchers report they have discovered how two problem proteins known to cause Parkinsons disease are chemically linked, suggesting that someday, both could be neutralized by a single drug designed to target the link.
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Some Parkinson’s Treatment Options
Parkinson’s disease has no cure, but there are treatment options to control your symptoms and improve your quality of life which include:
- Medication. Levodopa and other medications, which are trying to boost dopamine . There are number of those medications which can be used alone or in combination. Although many of those medications can help you significantly control your motor symptoms , you might also experience side effects and diminished efficacy over time.
- Physical, occupational, and speech therapy are usually part of your treatment plan and can improve your balance, mobility, ability to do daily tasks, and speech.
- Deep brain stimulation is a surgery performed by a neurosurgeon, and in indicated patients can help with motor symptoms, though non-motor symptoms, such as falls, constipation, low blood pressure and incontinence do not improve.
- Tai Chi is a Chinese martial art that may help sufferers regain some of their balance and strength, as well as decrease the risk of falling. Dance, such as a Zumba, may also help, as can using a stationary bicycle and rock steady boxing.
Many treatment options for Parkinson’s are most effective when used in conjunction with others such as taking medication and doing physical therapy.
What Are The Important Points Regarding Duodopa At The End Of Life
Duodopa is a continuous infusion of dopaminergic medication administered as a gel into the gut, pumped via a percutaneously inserted gastrostomy tube . There is a requirement for care of the stoma and PEG tube together with functioning of the pump by the patient or carer.41 It reduces the time in motor off periods in advanced PD and quality of life.42 There is evidence of effective treatment up until death from within a case series.43
What Is The Prognosis And Life Expectancy For Parkinsons Disease
The severity of Parkinsons disease symptoms and signs vary greatly from person to peson, and it is not possible to predict how quickly the disease will progress. Parkinsons disease itself is not a fatal disease, and the average life expectancy is similar to that of people without the disease. Secondary complications, such as pneumonia, falling-related injuries, and choking can lead to death. Many treatment options can reduce some of the symptoms and prolong the quality of life.
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Is There A Way To Slow The Progress Of Parkinson’s
Parkinson’s disease is a progressive disorder, which means its symptoms worsen slowly over time. There is no cure for Parkinson’s disease yet and no known way to slow its progress.
But there are treatments and medications that can control or reduce the symptoms and help people live productive lives. Some research suggests that regular exercise may slow the progress of Parkinson’s. Physical activity can also alleviate stiffness and other symptoms.
There are other things a person can do to feel better after a diagnosis of Parkinson’s, such as joining social support groups and learning as much as possible about the disease. It’s also important to make the home safer and less cluttered, since a person with Parkinson’s is more likely to fall.
While it’s not always easy, neurologists say a positive mindset can also help.
Caring For Your Health With Parkinson’s Disease
In addition to caring for your Parkinson’s health, it is also important to care for your overall health. This means visiting your primary care physician periodically for preventive care like the annual flu shot and cancer screeningsfor example, a mammogram for breast cancer screening and a colonoscopy for colon cancer screening.
A primary care physician can also evaluate for risk factors related to heart attacks and strokes, and provide counseling on exercise, smoking, alcohol use, depression, or other mental health concerns. Regular visits to your primary care physician or neurologist will also allow them to catch bacterial infections like urinary tract infections before they get serious.
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Does Paraquat Cause Parkinsons Disease
As paraquat application has increased, so has the rate of Parkinsons disease diagnosed in the U.S. population. In fact, early-onset Parkinsons disease saw a 107% increase in diagnoses between 2017 compared to 2013, when paraquat started replacing Roundup.
The National Institute of Health completed the Farming and Movement Evaluation study in 2011. According to its results, you are almost twice as likely to develop Parkinsons disease if youve been exposed to paraquat or a similar herbicide such as rotenone. Another 2012 study found that people exposed to paraquat with a certain genetic variation had 11 times the risk of getting Parkinsons disease compared to the general population.
The U.S. Environmental Protection Agency is currently in the process of reviewing the effects of paraquat and deciding whether to further regulating the product.
The highest risk of paraquat exposure is occupational, affecting farm and agricultural workers who mix, load, or apply paraquat or post-process paraquat-sprayed crops. That includes:
- Farm and field workers
- Agricultural inspectors
- Herbicide mixers and sprayers
But even if youre not a farm or agricultural worker, you can be exposed to the dangers of paraquat. A 2009 study found that living within 1600 feet of a facility that uses paraquat can increase your risk of Parkinsons disease by 75%, especially when exposed at a younger age. You could have been exposed to paraquat without even realizing it.
The Last Year Of Life In Parkinson’s Disease
The study also examined nearly 45,000 hospitalizations in people with terminal Parkinson’s, meaning their end-of-life period.
Of those with terminal PD, the most common reasons for being in the hospital were:
- Infection
- Heart disease
- Lung disease that was not from an infection
Less common causes for hospitalization were problems related to the stomach or intestines, muscles, nervous system, or endocrine system .
It is not surprising that infection was the most common hospitalization before death, as people with Parkinson’s are vulnerable to developing a number of infections as a result of their disease. For example, bladder dysfunction in Parkinson’s increases a person’s risk of developing urinary tract infections, which can become life-threatening if not detected and treated promptly.
In addition, research suggests that aspiration pneumonia is 3.8 times more common in people with Parkinson’s as compared to the general population. It has also been consistently reported to be the main cause of death in people with Parkinson’s.
Aspiration pneumonia results from underlying swallowing difficulties, which leads to stomach contents being inhaled into the lungs. Immobilization and rigidity, which can impair phlegm removal, also contribute to the development of pneumonia in people with Parkinson’s.
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What Is The Progression Of Parkinson’s Disease
Parkinsons disease is a progressive movement disorder, which means that the symptoms start small and gradually increase. The progression of Parkinsons typically begins with slight tremors in the fingers or hands and then progresses into other symptoms over time. Parkinsons is a disorder of the nervous system that affects movement, muscle control, and balance. The disease affects people of all ages, but most frequently occurs in people aged 55-75, although up to 15% of people have early onset Parkinsons which can start as young as 21. Roughly 1 million Americans have the condition.
Because Parkinsons is progressive, there are different levels of care. In early stages, you may need only medication and exercises you do at home to control your symptoms. As symptoms increase, additional or alternative medications and professional speech, physical, and occupational therapy may be recommended. Deep brain stimulation is surgery to implant a device, similar to a heart pacemaker, that uses electrical pulses to regulate brain activity causing symptoms.
Is Parkinsons Disease Inherited
Scientists have discovered gene mutations that are associated with Parkinsons disease.
There is some belief that some cases of early-onset Parkinsons disease disease starting before age 50 may be inherited. Scientists identified a gene mutation in people with Parkinsons disease whose brains contain Lewy bodies, which are clumps of the protein alpha-synuclein. Scientists are trying to understand the function of this protein and its relationship to genetic mutations that are sometimes seen in Parkinsons disease and in people with a type of dementia called Lewy body dementia.
Several other gene mutations have been found to play a role in Parkinsons disease. Mutations in these genes cause abnormal cell functioning, which affects the nerve cells ability to release dopamine and causes nerve cell death. Researchers are still trying to discover what causes these genes to mutate in order to understand how gene mutations influence the development of Parkinsons disease.
Scientists think that about 10% to 15% of persons with Parkinsons disease may have a genetic mutation that predisposes them to development of the disease. There are also environmental factors involved that are not fully understood.
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