Tuesday, November 29, 2022

How Does Parkinson’s Affect Daily Life

Causes Of Parkinsons Disease

‘Wearing off’ – Paula’s story of living with Parkinson’s

At present, we do not know the cause of Parkinsons disease. In most people there is no family history of Parkinsons Researchers worldwide are investigating possible causes, including:

  • environmental triggers, pesticides, toxins, chemicals
  • genetic factors
  • combinations of environment and genetic factors
  • head trauma.

Coping With The Side Effects Of Medications

Levodopa-carbidopa therapy is the most effective treatment for alleviating the motor symptoms of PD, however, long-term treatment with levodopa may cause dyskinesia . Dyskinesia can greatly impact a persons quality of life, and some people find it very disturbing. While there are currently no treatments for dyskinesia, it is an ongoing area of research. For those people who experience dyskinesia, medications may be adjusted or deep brain stimulation may be an option.2,3

Some medications used to treat PD can cause impulse control disorders, behavioral disorders in which the person acts out repetitively, excessively, and compulsively in ways that interfere with major areas of life functioning. The most common impulse control disorders seen in people with PD are excessive shopping, unusual or increased sexual behavior, compulsive gambling, and compulsive eating. Identification and treatment of these behaviors is critical as they can have devastating effects on the patients and caregivers lives.1

Advice For Care Partners

Being a care partner can sometimes be challenging, but having a care partner is essential to the well-being of every person with Parkinsons. Here are three areas to focus on as you adjust to your new role as a care partner while maintaining a healthy and supportive relationship with your loved one.

Managing Your Loved Ones Care

Even though care partners do not need special medical training, they play a central role in the medical care of people with PD. Accompany your loved one to doctors appointments, with their permission. You can offer an outside view on how the person with Parkinsons has been doing in the interim since the last visit. You may also recognize new symptoms or subtle changes that the person with Parkinsons doesnt, such as changes in mood or behaviors, withdrawal from social interaction, or speech that has become softer or more monotone.

When you and your care partner attend appointments together, you both hear what the doctor has to say. You can compare notes afterword and together discuss management options offered. And, you can both be clear on the treatment plan.

Keeping track of all the details associated with medical care can be overwhelming. Here are some tips to help:

Parkinsons and Your Relationship

If you feel comfortable doing so, visit a counselor or therapist together or individually to work through the many changes and emotions you are experiencing and to learn how you can have a healthy and supportive relationship.

Caring for Yourself

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Wheelchairs: Choosing The Right One

As PD advances, a wheelchair may become a necessity. It is important to know what to look for when picking the chair and who on your comprehensive care team can help you make this decision.Here are a few tips to guide you through the process:

  • Schedule an appointment with your occupational or physical therapist to find out which chair best meets your needs.
  • Check with your insurance company to learn about covered services in your plan. Not all wheelchairs will be covered.
  • Try to pick a lightweight wheelchair, as they are easier to lift in and out of the car. Depending on your needs and your caregiver situation, you might want a wheelchair with more features for the home and a lighter, even foldable, wheelchair for travel.
  • Choose a reclining chair back, which is helpful if making posture changes, have low blood pressure or need to rest during the day.

Complex Parkinson’s Disease And Palliative Care

Parkinsons disease: Five stages of Parkinson disease ...

Complex Parkinson’s disease is defined as the stage when treatment is unable to consistently control symptoms, or the person has developed uncontrollable jerky movements .

These problems can still be helped by adjustment or addition of some of the medications used to treat Parkinson’s disease, under the supervision of a doctor with a specialist interest in Parkinson’s disease.

As Parkinson’s disease progresses, you’ll be invited to discuss the care you want with your healthcare team as you near the end of your life. This is known as palliative care.

When there’s no cure for an illness, palliative care tries to alleviate symptoms, and is also aimed at making the end of a person’s life as comfortable as possible.

This is done by attempting to relieve pain and other distressing symptoms, while providing psychological, social and spiritual support for you and your family.

Palliative care can be provided at home or in a hospice, residential home or hospital.

You may want to consider talking to your family and care team in advance about where you’d like to be treated and what care you wish to receive.

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Healthy Eating And Looking After Your Teeth

Following a balanced diet will enhance vitality and help ensure that your medications are as effective as possible.

Keeping teeth and gums healthy can be more difficult if you have Parkinson’s due to the nature of its symptoms and because some of the medications used to treat it can affect dental health. There are many things you can do to improve your oral health, as well as many professionals who can offer advice.

See also Eating well and Teeth and oral health.

Relationships With Family And Friends

Living with Parkinsons will also affect your family and friends and it will take time for you all to adjust to the illness being part of your lives. How much you want to involve those close to you in the early stages is a very personal decision, however, it is important to remember that you would have had Parkinsons for some time – things wont have suddenly changed overnight.

For ideas on how to talk to family and friends and maintain strong relationships, as well as other tips on communication, see Relationships & communication.

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Getting Dressed With Parkinson’s Disease

  • Get dressed while sitting in a chair that has armrests — this will help you keep your balance.
  • Roll from side to side to get pants over your hips. You can do this while sitting in a chair or lying down on your bed.
  • Wear clothes that are loose fitting and have elastic waistbands.
  • Choose wrap-around clothing instead of the pullover type. Also choose clothing that opens in the front, not the back so you don’t have to reach behind you.
  • Wear clothing with large, flat buttons, zippers, or Velcro closures.
  • Use a button hook to button clothing.
  • Use a dressing stick if you have shoulder weakness to get your coat or shirt on or off.
  • Use a zipper pull or attach a leather loop on the end of the zipper to zip pants or jackets.
  • Wear slip-on shoes or buy elastic shoelaces that allow you to slip your shoes on and off without untying the laces. Use devices such as a sock donner and long-handled shoehorn for additional assistance.

Parkinson’s Disease Symptoms: Are They Manageable

Living With Parkinson’s Disease

Currently, there is no cure for Parkinson’s disease. The goal of treatment is to mitigate symptoms, such as the following.

  • Tremors: About 80% of people with Parkinson’s disease will experience tremors, the involuntary shaking of different parts of the body. This symptom can affect the hands, feet, legs, jaw and mouth, and it typically occurs when you are at rest. Tremors usually start on one side of the body, although they can progress to affect both sides of the body. Because the tremors tend to go away with movement, they do not necessarily have a major impact on daily life.

Tremors can still be frustrating. They can cause you to drop things and make simple tasks like eating difficult. Some small adjustments can make living with tremors more manageable. For example, when doing something with your hands like eating or shaving, try sitting down instead of standing. Also, try bracing your elbows on a table while doing these things.

  • Slowed movements: Parkinson’s disease can also cause slowed movements, known as bradykinesia. Bradykinesia can take a wide variety of forms, but it does affect all Parkinson’s disease patients. It may mean reduced motion in your arms as you walk, difficulty walking, trouble completing repetitive movements and limited facial expressions.

The severity of bradykinesia can increase over time. Exercise to stretch and strengthen your muscles is one potentially helpful approach to mitigating this symptom.

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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.

Parkinsons Disease Is A Progressive Disorder

Parkinsons Disease is a 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 and many live between 10 and 20 years after being diagnosed. However, a patients age and general health status at onset factor into the accuracy of this estimate. Age is the greatest risk factor for this condition, but young-onset Parkinsons disease, which affects people before age 50, accounts for between 10 and 20 percent of PD cases.

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.

Pharmaceuticals 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 activities of daily living and ones quality of life.

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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.

Navigating The Moods Of The Patient

How Does Parkinson

People with PD may have emotions come up as they grieve the loss of their former abilities. Sometimes they may feel frustrated and lash out in anger or insist on doing something they should not, such as climbing a ladder when they have balance impairment. As the care partner, you may need to establish limits on their activities and have compassion for their emotional outbursts. Many people with PD also experience mood changes, such as anxiety and depression, and these symptoms should be discussed with the patients doctor to facilitate proper treatment.1

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Tips For Caring For Someone With Parkinsons Disease

Parkinsons disease is a neurodegenerative disorder that affects predominantly dopamine-producing neurons in a specific area of the brain called substantia nigra. While genetic markers and environmental triggers can be contributing risk factors, the root cause is unknown. The end result, however, is that dopaminergic neurons gradually break down or die. As dopamine levels decrease, abnormal brain activity takes place, leading to impaired movement. People usually develop the disease around age 60 or older, and men are more at risk than women.

Symptoms of this progressive nervous system disorder generally develop slowly over years, and typically include tremors, stiffness, slowing of movement, walking or balance problems, decreased ability of automatic movements , and slurred speech. Non-motor-related symptoms also often manifest, such as apathy, depression, constipation, sleep behavior disorders, loss of sense of smell, and cognitive impairment. While there is no cure for PD, medications and even surgery might significantly improve symptoms. The disease itself is not fatal, but disease complications can be serious.

Grooming Try having them use an electric toothbrush and/or razor if their fingers are often stiff. If you help with brushing or flossing, try not to touch the back of the tongue to prevent gagging. Keep a small towel handy for any drooling.

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How To Help Someone With Parkinsons Disease Thrive

The symptoms of Parkinsons can have a significant impact on physical, mental and social abilities, but family caregivers can make life much easier for seniors who are living with this condition. By learning about PD and planning ahead, a caregiver may be able to anticipate changing needs and abilities and resolve issues before they negatively affect a loved one. Taking proactive steps to ensure a PD patients safety, extend their independence and preserve their functional abilities will help them remain in their own home longer and have a beneficial impact on their overall quality of life.

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Looking After Your Financial And Legal Affairs And Knowing Your Entitlements

Having Parkinsons may affect you financially for a number of reasons, if, for example you have to stop working or need additional care. It is important to plan for your future sooner rather than later in order to compensate for any financial hardships. You may be legally entitled to certain benefits, so speak to your healthcare professionals, local benefit offices or others in the same situation as you for tips and advice.

See also Legal and financial.

What Causes Parkinson’s Disease

Impact of Falls and Parkinson’s Disease

A substance called dopamine acts as a messenger between two brain areas – the substantia nigra and the corpus striatum – to produce smooth, controlled movements. Most of the movement-related symptoms of Parkinson’s disease are caused by a lack of dopamine due to the loss of dopamine-producing cells in the substantia nigra. When the amount of dopamine is too low, communication between the substantia nigra and corpus striatum becomes ineffective, and movement becomes impaired the greater the loss of dopamine, the worse the movement-related symptoms. Other cells in the brain also degenerate to some degree and may contribute to non-movement-related symptoms of Parkinson’s disease.

Although it is well known that lack of dopamine causes the motor symptoms of Parkinson’s disease, it is not clear why the dopamine-producing brain cells deteriorate.

  • Genetic and pathological studies have revealed that various dysfunctional cellular processes, inflammation, and stress can all contribute to cell damage.
  • In addition, abnormal clumps called Lewy bodies, which contain the protein alpha-synuclein, are found in many brain cells of individuals with Parkinson’s disease. The function of these clumps in regards to Parkinson’s disease is not understood.

In general, scientists suspect that dopamine loss is due to a combination of genetic and environmental factors.

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How Can Parkinsons Affect Someone At The Advanced Or Palliative Stage

Parkinsons progresses in stages: diagnosis, maintenance, advanced and palliative. Professionals should have talk to people with Parkinsons about advance care planning in the earlier stages of the disease. This can allow them to express their wishes and preferences for their care in the later stages of the disease and make plans for the future.

Although the condition progresses differently and at a different speed for each person, the advanced stage can potentially cover a long period of time.

Problems that affect someone with advanced Parkinsons may include:

  • medicines being less effective at managing symptoms than before
  • having to take lots of medicines to manage symptoms and side effects
  • more off periods when the effects of medication are reduced, and people experience movement fluctuations and involuntary movements
  • increased mobility problems and falls
  • swallowing difficulties
  • less control of their Parkinsons symptoms, which become less predictable
  • pain.

Some of the more advanced symptoms can lead to increased disability and poor health, which can make someone more vulnerable to infection, such as pneumonia. People with Parkinsons most often die because of an infection or another condition, usually caused by Parkinsons.

Using The Internet To Your Advantage

The Internet is an invaluable tool and is brilliant for finding information on Parkinsons. Search engines such as Google make it possible to target particular topics of interest within seconds, 24 hours every day of the year. However, it needs to be used with some discretion, as not everything posted on the Internet can be trusted and you need to be vigilant. By following a few simple rules you can certainly benefit from the wealth of information available to you. If you have difficulty using a computer, then there are various aids which can help so dont be put off. The Internet can also be a useful tool for doing things that might otherwise take more time, for example booking holidays, or making purchases online.

See also Using computers and the Internet.

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Activities Of Daily Living

Sometimes Parkinsons disease can complicate the basic daily activities a person with living with Parkinsons once did easily, like bathing, dressing, eating, sleeping and even walking. It can be hard to adjust to these changes, but there are ways to improve safety while supporting a good quality of life. Review these pages for tips to ease:

Also consider talking to an occupational therapist , who can help simplify home safety and independence by suggesting daily living modifications or adaptations. Your doctor can give you a referral. Additionally, you can call the Parkinsons Foundation Helpline at 1-800-4PD-INFO to find an OT in your area.

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