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Planning for the What-Ifs: Navigating the Future With Advanced Parkinson’s Disease

pd-symptoms-parkinson's disease
pd-symptoms-parkinson's disease

People can have very different experiences of Parkinson’s disease (PD). The journey is different for everyone, but it is wise to be aware and prepared.

Rebecca Gilbert, M.D., Ph.D.

Chief Scientific Officer, American Parkinson Disease Association

When dealing with a chronic disease like Parkinson’s disease (PD), it’s hard to think about the tough stuff–the what ifs, the worst-case scenarios, the unknowns.

Although Parkinson’s disease is a progressive condition, for most people with the disease the progression is slow. This affords you many years of good living–exercising, spending time with family, and maybe even working.

For some, the progression of the disease can lead to advanced symptoms which are much more difficult to navigate. The PD journey varies from person to person and features a wide spectrum of symptoms with a range of severities that can make it hard to know what lies ahead.


How can you plan for the future when you don’t know what the future will bring?

The first thing to do is educate yourself about the disease and the possible changes and challenges it can bring. This will help you be prepared for tougher times if that is in your future.

Proactive steps can help improve symptoms and quality of life so always bring any new or worsening symptom to your doctor’s attention immediately.

Some symptoms of advanced PD:

  • Balance and gait issues can be significant. Some people become unable to walk and must use a wheelchair exclusively or near-exclusively.
  • Mental health concerns in advanced PD encompass cognitive decline/dementia, depression, apathy, anxiety, psychosis (which encompasses hallucinations, delusions, paranoia), and behavior problems (which encompasses anger, aggression, agitation, irritability, and personality changes).
  • Autonomic dysfunction — such as widely-fluctuating blood pressure and incontinence — can be disabling. Severe swallowing difficulties with aspiration and choking can occur.

Addressing the symptoms of advanced PD

  • Bring any mental health issues to the attention of your healthcare team right away so you can discuss ways to mitigate the issues.
  • If these problems arise, your doctor will likely consider whether it is being caused by a medication side effect or another medical illness.
  • If not, non-drug approaches like modification of the environment and redirection of the patient’s attention may be the first steps to consider.

To be clear, many people never reach this stage of PD and instead, live for many years at less advanced stages. The person’s end of life may occur at an old age from another medical illness entirely. But we would be remiss if we did not educate you about the full spectrum of possibilities.


Educate yourself

There are reliable resources available specifically about Advanced PD. If you’d like to learn more, the American Parkinson’s Disease Association (APDA) has a series of blog articles about everything from bladder and bowel issues, swallowing, falls and immobility, and palliative care–among other resources.

For more information and support, contact APDA at or 800-223-2732.

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