Tuesday, April 23, 2024

Cost Of Living With Parkinson’s Disease

What Is Parkinson’s Disease

Davis Phinney on Living with Parkinson’s

Parkinson’s disease is a neurodegenerative disorder that affects the way you move.It affects the nerve cells in the brain that produce dopamine. Parkinson?s disease symptoms include muscle rigidity, tremors, and changes in speech and gait. After diagnosis, treatments can help relieve symptoms, but there is no cure. It occurs when there is a problem with the nerve cells in the brain that produce an important chemical called dopamine, which is responsible for motor function. As dopamine levels drop it leads to progressive deterioration of motor function in the person. Early signs of Parkinson?s disease include tremors in the hands, rigidity or stiffness in the body, difficulty while walking. The muscles of the person suffering from Parkinson?s disease gradually become weaker with time.

Qol And Wellbeing Of Pwp

The impact on QoL and wellbeing of PwP as the condition progressed was noted from changes to both motor and non-motor symptoms in 16 studies . These were separated into two groups based firstly on the severity and diversity of symptoms, and secondly on self-help group and social support and their interface with their health and wellbeing.

To investigate the wide-ranging symptoms, the means of obtaining results from the individual papers came from a varied selection of methods such as thematic analysis from interview methods, and measurement instruments such as self-filled and researcher administered questionnaires, asking about general health state, or specific aspects such as sleep quality, mood, disability, and adjustment. Some were condition specific and some generic, plus there were validated questionnaires or researcher-developed tools specific to their study requirements .

Differential effects of symptoms with stages of Parkinsons

Mobility difficulties affecting walking and turning, with consequences of falling, influenced costs related to injury and increased time in the hospital, and impeded involvement in social activities. Motor symptoms significantly influenced QoL scores with lower HRQoL reported in PwP.12 A study in Scotland found the QoL of PwP who attended a movement disorders clinic as compared to a general medical clinic to be significantly higher and better.13

Self-help groups and social support in PwP

How Can I Know What Services I Need

If you have Parkinson’s disease, talk with your family and caregivers about what services you need. Take time to consider what services are important to you before you visit assisted living communities. This step will help ease your transition. Think about these questions:

  • Why do I want/need to change my living arrangements?
  • What daily activities do I need help with ?
  • How often do I need help?

Recommended Reading: When Is The Best Time To Take Parkinson’s Medication

The Cost Of Parkinson’s In Each Country

The report also shows that the exact cost of Parkinson’s is different in each UK country as their governments, assemblies and parliaments set their own budgets.

Open each section below to find out more about the cost of Parkinson’s in your country.

The findings of the research in England found that households where someone has Parkinsons are £17,094 out of pocket each year.

This breaks down into:

  • higher social care costs
  • loss of income due to early retirement or reduced working hours

Medical Care And Travel Expenses

£16,000 a year: the hidden price of Parkinsons

Medical care is a complicated subject. If youre lucky enough to live in or near a city, the options allow you the privilege of choice. But what if you have to commute an hour each way and youre not comfortable with your driving abilities anymore? What if you live in a remote area of the country and medical care is limited? The greatest cost in this situation seems to be time your time and the time of a loved one.

Since undergoing deep brain stimulation, an expensive surgery, Dad continues to see his neurologist to tune the hardware. He always has a companion for these visits, which increase his quality of life. But he gives up time to travel and money for gas, and he probably pays something for each doctor visit. Sometimes hell also see an herbalist and a chiropractor. And even with insurance, he spends a lot of money on medication.

Read Also: Parkinson’s Disease Mental Health

Healthy Business Healthy Employees

As your companys HR or benefits administrator, you have a knack for wanting to help and educate your employees on how they can become savvy health care consumers. And companies that offer Wellmark coverage, also offer their employees the tools and resources they need to help manage their conditions, monitor claims and costs, compare quality, and find top centers for specialty care.

With myWellmark®, your confidence can be restored Opens in a newwindow in your employees knowledge of their health insurance coverage, leaving you to answer fewer questions, calls and emails about health insurance information.

If they havent done so already, encourage your employees to register for myWellmark Opens in a new window. Questions? Contact your authorized Wellmark account representative or email us at .

Do You Know About Other Organizations/systems That Provide Financial Help To People Living With Parkinsons

If so, please let us know about them in the comments. There are so many people out there who dont have access to the funds they need to take the medications that will truly help them live well with Parkinsons. We dont want anyone in that position so, if you have a story about how you received the help you needed, please leave a comment or email us at .


Read Also: Nursing Management Of Parkinson’s Disease

Contracts Costs And Finance Questions

  • Is a contract agreement available to include accommodations, personal care, health care, and support services? When may a contract be terminated and what is the refund policy? Are additional services available if the residents’ needs change?
  • How do you pay for additional services that are needed on a temporary basis ?
  • Are there different costs for various levels or categories of services?
  • Are there any government, private, or corporate programs available to help cover the cost of services to the resident?
  • What are the billing, payment, and credit policies?
  • May a resident handle their own finances with staff assistance , or should a family member or outside party be designated to do so?

The Cost Of Living And Working With Parkinson’s Disease

Living with Parkinson’s

$25 million. The combined direct and indirect cost of Parkinson’s disease, including treatment, Social Security payments and lost income in the United States alone.

$2,500. The average cost of medications for Parkinson’s patients each year.

$100,000. The average cost of therapeutic surgery that will set back a Parkinson’s patient.

Recommended Reading: Big Movements For Parkinson’s

Data Extraction And Synthesis

Papers were read and data reviewed using a standardized extraction form encompassing: author/date, the focus of the study, research design, sample size, and questionnaires/instruments employed. The information was categorized into four themes: QoL and wellbeing of PwP, QoL and wellbeing of caregivers and family members, employment and living conditions, and direct and indirect health care and societal cost. For each category, the measures that demonstrated change were then considered in terms of how they added to this reviews aims.

Medicines In Development For Parkinson’s Disease 2014 Report

Americas biopharmaceutical research companies are currently developing 37 medicines to help the estimated 1.5 million Americans living with Parkinsons Disease.

PhRMA | April 8, 2013

Americas biopharmaceutical research companies are currently developing 37 medicines to help the estimated 1.5 million Americans living with Parkinsons Disease, a motor system disorder resulting from the loss of dopamine-producing brain cells. All of the medicines are either in clinical trials or awaiting review by the U.S. Food and Drug Administration.

Recommended Reading: Physical Therapy For Parkinson Disease Patients

Employment And Living Conditions

The four studies on the financial implications of Parkinsons examined results from previously conducted surveys, the use of researcher-decided questions, and a semi-structured interview .

Full-time or part-time working was affected for PwP, with a reduction in employment for those in the later stages of the condition. From a review of patient surveys of PwP diagnosed more than 5 years, 610% were working full time, 7% part-time, and 46% were unable to work, with this percentage increasing to 82% after more than 10 years post-diagnosis.44 The same survey identified the average time lost from employment due to Parkinsons symptoms to be 4.9 years, with gender, type of work, and living circumstances exerting a minimal influence on this figure.44

An assessment of the QoL and care of PwP attending movement disorders clinic in England, found the main problems with care related to accommodation, travel, holidays, and hobbies, with forced early retirement and waiting for welfare benefits worsened financial difficulties in PwP.45

Employment conditions altered for carers too, adding to their stress.37 One-fourth of carers had to reduce their working hours to care for someone with Parkinsons and 30% endured a reduction in financial status,37,46 also resulting in problems accessing state welfare benefits.46

Features Of Individual Spaces

Living with Parkinson
  • Are different sizes and types of units available?
  • Are units for single and double occupancy available?
  • Do residents have their own lockable doors?
  • Is a 24-hour emergency response system accessible from the unit?
  • Are bathrooms private? Do they accommodate wheelchairs and walkers?
  • Can residents bring their own furnishings? What may they bring?
  • Do all units have a telephone and cable television? How is billing handled for these services?
  • Is a kitchen area/unit provided with a refrigerator, sink, and cooking element?
  • May residents keep food in their units?
  • May residents smoke in their units? May they smoke in public areas?

You May Like: What Are The Symptoms Of Early Onset Parkinson’s Disease

Medicaid / Hcbs Waivers

Under Medicaid, some family members can be paid as caregivers.

Nursing Home CareHome and Community Based ServicesPCA / PCS Programs

PCA stands for Personal Care Assistance or Personal Care Attendant and PCS for Personal Care Services. These are regular Medicaid programs that will pay a caregiver to come to ones home and provide personal care such as assistance with the activities of daily living An especially attractive element of these programs is the fact that often times, the paid caregiver can be someone familiar to the individual with Parkinsons. Friends and certain family members can be hired as paid caregivers. The downside of PCA / PCS programs are that the hourly wage that caregivers receive is very low and this is an optional Medicaid benefit. This means not every state offers this option as part of their regular Medicaid programs. A list of states which do offer PCS can be found here. Be aware that this list is not exhaustive and if one does not see their state listed, they should also inquire with their state Medicaid office if such a program is available in their state.

Managing The Cost Of Chronic Illness

Chronic illness is expensive. It costs money, time, and peace of mind. Whether youre sifting through your worries or counting the pennies in your pocket, illnesses affect all avenues of life.

Before the symptoms of a disease appear, one may go about daily life unencumbered by thoughts of self-preservation. But disease changes everything.

According to the U.S. Centers for Disease Control and Prevention, 90 percent of the countrys annual healthcare spending some $3.5 trillion is related to chronic illnesses such as diabetes, Alzheimers disease, and others.

With Parkinsons disease, the same costs apply. While the return is generally worth the investment, Parkinsons treatments are expensive. And people most often are hit with shocking bills at the same time theyre losing physical independence.

So how do you foot the bill? Where is the balance between finding the appropriate care and saving your pennies? What do you do when financial limitations find you?

Don’t Miss: Parkinson’s Syndrome Vs Disease

Complex Parkinson’s Disease And Palliative Care

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.

Sidebar: Ninds Steps Up Pursuit Of Pd Biomarkers

âI love you butâ¦â? Living with Parkinsons Disease

In 2012, the NINDS dramatically accelerated efforts to identify biomarkers by establishing the Parkinsons Disease Biomarkers Program . This unprecedented program unites a range of stakeholders from basic and clinical researchers to healthcare professionals, the NINDS staff, information technology experts, and people living with PD and their families.

PDBP supports research and builds resources aimed at accelerating the discovery of biomarkers to ultimately slow the progression of PD. For example, the program has established a repository of biological specimens and a Data Management Resource system maintained by the NIH Center for Information Technology. The DMR allows researchers to access clinical, imaging, genetic, and biologic data, while a complementary PDBP-supported project develops statistical tools to analyze vast quantities of data so that patterns can be identified across these diverse sources of information.

Recommended Reading: Does Parkinson’s Affect Your Mind

Medication And Health Care Questions

  • What is the residence policy regarding storage of medication, assistance with medications, and medication record-keeping?
  • Is self-administration of medication allowed?
  • Who coordinates visits from a nurse, physical therapist, occupational therapist, or other specialist if needed?
  • Does a doctor or nurse visit the resident regularly to provide medical checkups?

The Importance Of Establishing Parkinsons Prevalence Numbers

Parkinsons Prevalence estimates will help the Parkinsons Foundation attract the attention of federal and state government as well as the pharmaceutical industry to the growing need and urgency in addressing PD. This is an important first step to better understanding who develops PD and why.

The next phase of this study will be to determine the rate of PD diagnosis or incidence, how that has changed over time and what is the rate of mortality among those affected by PD. Determining the prevalence and incidence will allow the PD community to effectively advocate for additional money and resources necessary to support Parkinsons research.

Parkinsons Foundation Prevalence Project numbers highlight the growing importance of optimizing expert Parkinsons care and treatment for people with Parkinsons, which would help future caregivers and ease the strain on health and elder care systems.

By supporting this study, the Foundation works to better understand Parkinsons with the goal of solving this disease. Establishing these numbers and using them to educate PD communities and influence legislation will help the foundation provide tailored resources, outreach and advocacy to the underserved PD populations across the nation. The entire published study is available in the Parkinsons Foundation scientific journal, npj Parkinsons Disease.


Also Check: Clinical Trials On Parkinson’s Disease

What Are The Symptoms Of Parkinson’s Disease How Is Parkinson’s Disease Diagnosed

People with Parkinson?s disease suffer from motor symptoms as well as non-motor symptoms.

Motor symptoms include intermittent tremors, slow and rigid movements. Non-motor symptoms include loss of smell, pain and even dementia.

In the initial stages of Parkinson?s disease a person may experience symptoms such as:

  • Slight rigidity in the arms and legs

  • unable to change facial expressions according to emotions spontaneously

  • Slight back pain due to which the posture of the person may be slightly stooped

  • Sudden stiffness in the body at times

  • Tremor on one arm on one side of the body

  • The symptoms may be experienced only on one side of the body

  • Handwriting may get messier and smaller

In the intermediate stage ofParkinson?s disease a person may experience symptoms such as:

  • Slower movements and therefore takes longer to do the daily work such as combing, dressing etc.

  • Loss of balance

  • Sudden falls due to frequent loss of balance

  • Slurring of speech

  • Inability to speak loudly and clearly

  • Erratic footwork, as the person is unable to start walking immediately after getting up as if the feet are stuck to the ground, or change direction quickly while walking

  • Taking smaller steps than normal while walking

  • Trouble swallowing food

  • May require aids while walking such as a walker

In the advanced stage ofParkinson?s disease the symptoms include:

Challenges And Positive Steps For The Future

Living With Parkinsons Disease Stock Photo

Parkinsons disease is the second most common neurological condition in Australia but remains one of the least understood in terms of its cause.

Parkinsons disease is the second most common neurological condition in Australia but remains one of the least understood in terms of its cause. There is a lack of awareness in the health and general community of the challenges and needs of those suffering from this complex and disabling condition, as well as community stigma and constraints in the delivery of health and social support services. As a result, Australia needs to develop a greater, more positive public awareness and understanding of PD among the general community.

This report, an update of the 2007 report commissioned by Parkinson’s Australia, finds that Parkinson’s Disease cost the Australian economy approximately $775 million in 2011-12, including approximately $480 million in health system costs and $110 million in lost productivity.

Read Also: Bed Sheets For Parkinson’s Patients

Parkinsons Foundation Partners With Va To Help Veterans Living With Parkinsons Disease

The U.S. Department of Veterans Affairs and the Parkinsons Foundation have teamed up to improve the health, well-being and quality of life of veterans living with Parkinsons disease. The collaboration is designed to ensure that veterans diagnosed with Parkinsons have access to the information and resources they need to better manage their health.

According to the Parkinsons Foundation, about 50 percent of veterans are 65 or older, an age that puts them at greater statistical risk for Parkinsons, which typically presents symptoms at age 50 or older. Moreover, many veterans have been exposed to environmental risks and traumatic brain injury, both of which carry a correlation with Parkinsons. Of the approximately 1 million people in the U.S. with Parkinsons, about 110,000 are veterans.

The VA/Parkinsons Foundation partnership has three primary program goals:

  • Increase access to Parkinsons information, resources and providers.
  • Educate both veterans and providers on Parkinsons management and best practices.
  • Help veterans navigate Parkinsons-related health and social services.

Popular Articles
Related news