Working with Parkinson's

Parkinson's can happen at any age. For some, you may be diagnosed after retirement. For others, you may still be working. Working with PD is possible, but it comes with challenges. Let's discuss everything you need to know about working with PD.

Challenges when working

Bradykinesia and rigidity can make any tasks with fine motor control such as typing or writing difficult. Rigidity may also lead to discomfort and pain that can impact work.

Many experience fatigue, which can make completing tasks or working a full day challenging.

Cognitive changes can impact your ability to concentrate on your work and problem solve difficult.

Anxiety, depression, and apathy can also influence your work.

Speech changes can make communication challenging.

American's with Disability Act

The American's with Disabilities Act (ADA) protects people with disabilities from discrimination in all areas of public life. If you have a physical or mental impairment that substantially limits at least one major life activities, then you are considered to have a disability. Employers must provide "reasonable accommodations" to qualified employees that allow then to do their job. These accommodations must not cause "undue hardship" to the employer.

Accommodations may include changing your hours, allowing you to work remotely, provide technologies or devices to help, and include breaks throughout your day.

You do not have to disclose your diagnosis to work unless you are requesting accommodations. If you do disclose your diagnosis, you do not have to go into detail other than how PD impacts your ability to complete your work tasks. Once you and your employer have agreed upon accommodations, always get it in writing.

Family medical leave act

Working and living in the US allows you to qualify for 12 weeks of unpaid leave for medical related purposes due to the Family Medical Leave Act. This time off can be used on an intermittent basis which is helpful for if you have days that you cannot go into work or if you need longer time off. Eligibility does depend on how long you have been employed, so talk with your employer.

Disability

Short term disability

Short term disability helps cover temporary conditions that prevent an employee from working for a limited time. Examples include surgery, childbirth, or injuries that require medical leave.

Long term disability

Long term disability provides income replacement for an extended period of time for employees who are unable to work due to serious medical conditions. Long term disability can last for months up to retirement age.

Most employers provided disability plans only replace a portion of your income, not the full income.

Social Security Disability Insurance

This type of insurance is available to those who have paid social security taxes but cannot work due to disability. To be eligible, you must have pain social security taxes and worked for a certain number of years, your disability must be expected to last at least 12 months, and your symptoms must be severe enough to meet social security's definition of disability. Impairments include motor and sensory dysfunction (like tremors and rigidity), mobility and dexterity challenges, and cognitive impairment.

You must provide detailed medical records, documentation of any functional limitations, and information regarding your work history.

Sources:

https://davisphinneyfoundation.org/parkinsons-accommodations-and-disability/

Funding for Parkinson’s Research at Risk

Funding for Parkinson’s Research at Risk

What we know and what we can do.

The National Institute of Health (NIH) made recent policy changes proposing to cap the reimbursement of "indirect costs" associated with research grants at 15%, a significant decrease from previous levels, which averaged around 27-28% [1]. This change has been temporarily blocked by a federal judge in response to lawsuits from multiple states [1], [2]. 

The situation regarding NIH funding is evolving rapidly, with ongoing legal challenges and potential policy changes. It's essential to stay informed about the latest developments.

Background on NIH Funding

The NIH is the largest public funder of biomedical research globally [3]. In fiscal year 2023, the NIH funded approximately  $253 million in  PD research. Its funding supports research at universities, medical schools, and other research institutions across the United States and internationally [4]. NIH funding comes in two main categories: direct costs, which are directly attributable to a specific research project (e.g., researcher salaries, supplies), and indirect costs (also known as Facilities and Administrative or F&A costs), which cover shared research expenses, utilities, lab maintenance, and administrative support [4].

The Proposed Cuts and Their Impact

The proposed policy change aimed to cap the reimbursement of indirect costs at 15% of the total grant amount. The NIH argued this would save over $4 billion annually and allow more funds to be directed toward direct research costs [1], [5].

However, research institutions strongly opposed this change, arguing that indirect costs are essential for maintaining research infrastructure and supporting ongoing research [4]. They contend that such a drastic cut would lead to layoffs, suspension of clinical trials, disruption of ongoing research, and even lab closures [2].

Legal Challenges and Current Status

Twenty-two states, including California, New York, and Massachusetts, filed lawsuits to block the cuts [2], [1]. These states argued that the policy change violates federal law, including the Administrative Procedure Act and appropriations acts that prohibit unilateral deviations from negotiated indirect cost rates [2]. A federal judge temporarily blocked the implementation of the policy pending further court arguments [1], [2]. This pause only applies to institutions in the states that joined the lawsuit [1], [2]. A hearing is scheduled for February 21, 2025 [1].

What can you do?

Contact Your Policymakers - Your voice is powerful.

Find your elected officials https://www.usa.gov/elected-officials

By helping policymakers understand what is fundamentally important to those who know Parkinson's disease intimately, you can shape their decision-making. Contact your elected officials now and tell them how they can use their votes to support Parkinson’s research and care.

Sample Letter

Subject: Urgent: Protect and Increase Funding for the National Institutes of Health (NIH)

Dear [Representative's Name],

As a concerned constituent of [Your District], and a person with Parkinson’s Disease (PD), I am writing to strongly urge you to prioritize robust and consistent funding for the National Institutes of Health (NIH).

NIH-supported research is the cornerstone of medical advancements that directly impacts my life and the lives of others with PD and other neurodegenerative diseases. By investing in this critical research, we are improving patient outcomes and also fostering economic growth through innovation and job creation in the biomedical sector.

Robust NIH funding is essential for the development of better methods of diagnosis, treatments and possibly finding a cure for PD. NIH research has a direct impact on my current and future health.

Early detection and prevention strategies developed through NIH research can significantly reduce long-term healthcare costs. I urge you to:

• Support legislation that increases NIH funding to a level commensurate with the need for medical breakthroughs.

• Advocate for consistent and predictable funding to allow researchers to plan long-term, impactful studies.

• Prioritize funding for emerging areas of research with the potential to address major health challenges facing our nation.

Your support for robust NIH funding is critical to ensuring a healthier future for all Americans.

Sincerely,

[Your Name][Your Address][Your Contact Information]

Note:

• Consider reaching out to your local representatives through phone calls or in-person meetings to further advocate for NIH funding.

• If you have any relevant personal stories or experiences related to NIH research, share them in your letter to add impactful weight to your message.

Sources

1. Federal judge blocks Trump administration cuts to medical research funding

2. Judge halts NIH funding cuts after California sues Trump administration ...

3. National Institutes of Health (NIH) | Turning Discovery Into Health

4. Johns Hopkins leaders: NIH cuts put lifesaving medical research and ...

5. NIH cuts put medical research at risk, scientists say, raising concerns

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