Wednesday, December 7, 2022
Wednesday, December 7, 2022
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How To Live With Parkinson’s

You Beat Parkinsons By Living Your Life

Living with Parkinson’s Disease: A Survivor’s Guide!

Stuart Scott, ESPNs beloved late sportscaster, once said, You beat cancer by how you live, why you live, and in the manner in which you live.

I say you beat Parkinsons disease the same way: by how you live, why you live, and the manner in which you live.

Notice anything that stands out in those two statements? Striving to beat a disease is about life. Its about living. To reiterate: Its about how you live, why you live, and the manner in which you live.

I hope the way I live is the same as how I want to live. For example, I want to live with joy. But wanting to live a certain way and actually living that way doesnt always happen. I may unintentionally walk around with a frown, which often is classified as a masked or stone face in Parkinsons. They are not very inspiring and often can be misleading.

A few years ago, I started feeling disheartened by comments Id receive about my expressionless demeanor from well-meaning people who were uninformed about Parkinsons.

What are you so mad about? I often was asked. Or, Why are you so sad?

Because the power of suggestion is so strong, sometimes when I heard these questions enough I would feel sad or mad. So, Id pray about it. And Id practice smiling. And you know what? Now people ask me, What are you so happy about?

I tell them that God gave me my smile back. In the Parkinsons world, thats a miracle. I suppose you could say it is part of the manner in which I live with a smile on my face.

Incidence Of Parkinsons Disease

Its estimated that approximately four people per 1,000 in Australia have Parkinsons disease, with the incidence increasing to one in 100 over the age of 60. In Australia, there are approximately 80,000 people living with Parkinsons disease, with one in five of these people being diagnosed before the age of 50. In Victoria, more than 2,225 people are newly diagnosed with Parkinsons every year.

Emotional Psychological And Intellectual Wellbeing

It is important to look after your emotional, psychological and intellectual wellbeing, as well as manage physical symptoms.

We all need to look after ourselves, but if you have Parkinsons this is particularly important as this can not only enhance your quality of life but it may also slow down the progression of some symptoms. There are many simple ways in which you can enhance your general wellbeing as outlined below.

Read Also: Juvenile Parkinson’s Disease Life Expectancy

Volunteer To Help Out

Everyday responsibilities like shopping, cooking, and cleaning become much more difficult when you have a movement disorder. Sometimes people with Parkinsons need help with these and other tasks, but they may be too proud or embarrassed to ask for it. Step in and offer to run errands, prepare meals, drive to medical appointments, pick up medications at the drug store, and help with any other day-to-day tasks they have difficulty with on their own.

Complications Related To Parkinson’s Can Affect Survival

Living With Parkinsons Disease Stock Photo

Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology. She is an associate professor of neurology at Tufts Medical School and medical director of the Lahey Clinic Multiple Sclerosis Center in Lexington, Massachusetts.

Parkinson’s is a common neurodegenerative disease, and although it is not fatal, research suggests it may influence life expectancy.

A 2012 study in Archives of Neurology examined the six-year survival of nearly 140,000 Medicare beneficiaries with Parkinson’s disease in the United States. During the six-year period, 64% of the participants with Parkinson’s disease passed away.

The risk of death of those with Parkinson’s was then compared to Medicare beneficiaries who did not have Parkinson’s or any other common diseases, including:

When controlling for variables like age, race, and gender, the six-year risk of death among people with Parkinson’s was found to be nearly four times greater than those Medicare beneficiaries without the disease or other common diseases.

At the same time, the rate of death among those with Parkinson’s disease was similar to those with hip fracture, Alzheimer’s dementia, or a recent heart attackalthough it was higher than those who had been newly diagnosed with either colorectal cancer, stroke, ischemic heart disease, or chronic obstructive pulmonary disease.

Recommended Reading: Can Parkinson’s Change Your Personality

What Are The Surgical Treatments For Parkinsons Disease

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.

A Comprehensive Exercise Program Includes:

  • Aerobic or cardiovascular activity. This can include any exercise that increases your heart rate such as walking, hiking, dancing, swimming or riding a bicycle. As always, pick something you enjoy doing. You are more likely to stick with it if you enjoy it
  • Flexibility and stretching. Certain muscles feel tight and stiff with Parkinsons. These are the primary muscles that flex your arms, shoulders, hips, knees and ankles. Stretching can reduce the impact of Parkinsons-related stiffness that affects your bodys movement
  • Strength training. Stronger muscles reduce the amount of energy you spend on everyday movements, resulting in less fatigue throughout the day as well as greater stamina
  • Balance and fine movement control. It is important to include exercises that challenge your balance, hand-eye coordination and fine motor control with your hands
  • Weight-bearing exercise. Walking, running and exercise that include foot impact can improve bone strength and lower risk of fractures due to falls
  • FUN! Pick exercises you enjoy. Our Pre-Exercise Worksheet can help you start the conversation with your healthcare provider before beginning or increasing the intensity of your exercise program

Before starting or increasing the intensity of an exercise program, be sure to have a conversation with your healthcare professional about anything specific to your symptoms and health that you should be aware of as you exercise.

Also Check: Wehaveparkinsons

How Important Is Exercise To People Living With Parkinsons

Research and personal experience continue to show the critical importance of exercise for people with Parkinsons. Regular physical exercise can improve mobility and coordination, boost your mood, reduce stiffness, minimize soreness and fatigue and may even slow down the progression of Parkinsons itself.

In this post, we help you explore how to start adding more movement into your daily routine as you learn the many benefits of exercise for people with Parkinsons.

Exercise not only improves your general health, but it also has specific physical, mental and emotional benefits as you live well with Parkinsons.

Parkinsons Disease Is A Progressive Disorder

How to Live Well with Parkinson’s

Parkinsons Disease is a slowly progressive neurodegenerative disorder that primarily affects movement and, in some cases, cognition. Individuals with PD may have a slightly shorter life span compared to healthy individuals of the same age group. According to the Michael J. Fox Foundation for Parkinsons Research, patients usually begin developing Parkinsons symptoms around age 60. Many people with PD live between 10 and 20 years after being diagnosed. However, a patients age and general health status factor into the accuracy of this estimate.

While there is no cure for Parkinsons disease, many patients are only mildly affected and need no treatment for several years after their initial diagnosis. However, PD is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time. This progression occurs more quickly in some people than in others.

Pharmaceutical and surgical interventions can help manage some of the symptoms, like bradykinesia , rigidity or tremor , but not much can be done to slow the overall progression of the disease. Over time, shaking, which affects most PD patients, may begin to interfere with daily activities and ones quality of life.

Don’t Miss: What Is The Life Expectancy Of Someone With Parkinson’s Disease

When And Where Can I Find Help

Support is a central and protective element that helps overcome daily challenges. Start identifying the people around you and the healthcare system or community resources that can help you.

Ideally, you should start building your support system as soon as you learn about the diagnosis. You may not need help immediately but finding resources will be easier now than the day you become overwhelmed.

If you feel like you can no longer cope with the exhaustion, take a break and let others take care of your loved one. Not everything will be done according to your requirements and methods, but you must learn to let go of certain things so that your health does not suffer.

Asking for help may seem difficult at first but remember that it is neither a sign of weakness nor abandonment of your loved one.

Parkinson Québecs toll-free, bilingual and confidential information and referral line is open Monday to Friday, from 8:30 am to 4:30 pm.

LAppui also offers an information service for caregivers, 7 days a week, from 8:00 am to 8:00 pm. You can reach them by phone at 1 855 852-7784 or by email at info-aidant@lappui.org. A resource directory for caregivers is also available on their website.

Ask those around you for help

Involve family and friends by discussing care options if you are not available or in the case of an emergency.

Create a list of professionals and caregivers in your support system

Open a file at the CLSC

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Recommended Reading: What Essential Oils Are Good For Parkinson’s Disease

The Role Of Dementia And Age

Dementia also plays an important role in survival with Parkinson’s. By the end of the above study, nearly 70% of the population with Parkinson’s had been diagnosed with dementia, and those with dementia had a lower survival rate as compared to those without.

This means that those with dementia were more likely to die during the six-year period than those without dementia. In addition, scientific studies have shown that increasing age is linked to an increased risk of death.

It’s important to remember that how a person’s Parkinson’s disease manifests and progresses is variable, and a person’s neurologist cannot accurately predict individual life expectancy.

There are simply no key signs or symptoms that allow a doctor to perfectly predict longevity. An older age and the presence of dementia are simply associated with an increased risk of dying.

Newly Diagnosed: Living Your Best Life With Parkinsons

What does Parkinsons disease mean for me? How long will I ...

A Parkinsons disease diagnosis is life-changing, but it doesnt have to keep you from living your best life. If you are newly diagnosed, you are not alone. The Parkinsons Foundation is here to assist and empower you at every stage to ensure you continue living well.

This article is based on a Parkinsons Foundation Expert Briefings webinar Newly Diagnosed: Living Your Best Life with Parkinsons” by Jenna Iseringhausen BSN, RN, Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders, NYU Langone Medical Center, a Parkinsons Foundation Center of Excellence.

How Parkinsons is Diagnosed

There is no specific test for Parkinsons disease. Doctors look at a persons symptoms and history, and may use various tests to make a diagnosis. A person must have two of these main movement or motor symptoms to be considered for a PD diagnosis:

Just as each person with PD is unique, so is each persons Parkinsons disease experience. Possible non-movement symptoms can include:

The Weight of Change

For some, a PD diagnosis is a relief an explanation for ongoing changes or symptoms. For others, it can take an emotional toll, both on the person with Parkinsons and their loved ones.

When youre ready, the Parkinsons Foundation recommends 5 steps you can take throughout your journey to support optimal living.

1. Set and Prioritize Goals

2. Talk About It

Read Also: Early Onset Parkinson’s Life Expectancy

Parkinson’s Disease Diet And Nutrition

Maintaining Your Weight With Parkinson’s Disease

Malnutrition and weight maintenance is often an issue for people with Parkinson’s disease. Here are some tips to help you maintain a healthy weight.

  • Weigh yourself once or twice a week, unless your doctor recommends weighing yourself often. If you are taking diuretics or steroids, such as prednisone, you should weigh yourself daily.
  • If you have an unexplained weight gain or loss , contact your doctor. He or she may want to modify your food or fluid intake to help manage your condition.
  • Avoid low-fat or low-calorie products. . Use whole milk, whole milk cheese, and yogurt.

Sex Sensuality And Intimacy

Parkinsons can bring with it physical and emotional changes that may challenge the sexual and intimate side of relationships and this may result in a less active and enjoyable sex life. There are professionals who can help you overcome such difficulties and offer lots of help and advice.

See also Intimacy, sex and sensuality.

Read Also: What Kind Of Effect Does R-dopa Have On Parkinson’s Disease

Do Not Socially Isolate Yourself

Social isolation is one of the factors that contributes the most to the progression of the disease of your loved one and the deterioration of your mental health. Strengthening your relationships and forming new friendships can help you take a step back from your role and better set your boundaries. Have at least one person who you trust and can talk to.

Continue regularly seeing your friends, either at home or elsewhere. Socializing is necessary even if your state, or that of your loved one, causes you to isolate yourself.

You may also benefit from the support of other caregivers. You are not alone and you can learn from their experiences. There are likely support groups specifically for caregivers in your area.

What Is The Trend Over Time In The Prevalence And Incidence Of Parkinsonism In Canada

Walk more normally with Parkinson’s – 4 simple ways

Between 20042005 and 20132014, the number of Canadians living with diagnosed parkinsonism increased from approximately 61,000 to 84,000, while the number of Canadians newly diagnosed increased from approximately 8,000 to 10,000. However, during the same period, there was no significant change in the age-standardized prevalence proportion, which remained at 0.4%, or the incidence rate, which went from 51.6 per 100,000 to 52.6 per 100,000. The sex differential also remained constant over time for both indicators .

Figure 3: Age-standardized prevalence and incidence of diagnosed parkinsonism, including Parkinsons disease, among Canadians aged 40 years and older, by sex, 20042005 to 20132014

Figure 3: Age-standardized prevalence and incidence of diagnosed parkinsonism, including Parkinsons disease, among Canadians aged 40 years and older, by sex, 20042005 to 20132014

Indicator
67.8 40.3

Notes: Age-standardized estimates to the 2011 Canadian population. The 95% confidence interval shows an estimated range of values which is likely to include the true value 19 times out of 20. The 95% confidence intervals of the prevalence estimates are too small to be illustrated.Data source: Public Health Agency of Canada, using Canadian Chronic Disease Surveillance System data files contributed by provinces and territories, July 2017.

Also Check: What Color Represents Parkinson’s Disease

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.

What Services Or Resources Improve Quality Of Life

Having a good quality of life and feeling supported can help a person stay positive. When asked what resources or services could help improve their quality of life, survey respondents suggested support and activities specifically designed for people living with the disease. Some of their suggestions included:

  • Local and in-person support groups
  • Activities/events for people with PD and their families
  • Exercise classes specifically for people with PD
  • Physical therapy and/or occupational therapy
  • In-home care
  • Financial support
  • Transportation/rides to medical appointments, support groups, etc.

The 4th Annual Parkinsons Disease In America survey was conducted online from May to August 2020. 1,472 people completed the survey.

Read Also: Does Parkinson’s Cause Memory Issues

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 .

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