Getting Prepared: What’s Next?

Reviewed by: HU Medical Review Board | Last reviewed: March 2017

When someone you love is diagnosed with Parkinson’s disease (PD), it’s natural to feel overwhelmed, scared, angry, or sad. It can help to learn more and be prepared for changes that will impact you and your loved one’s life.

Learn about the disease

Learn all you can about the condition, the potential symptoms, and the treatment options available. Having this knowledge can help you make informed decisions and advocate for your loved one’s care.

Learn about the stages of the disease and how it progresses. Of course, remember that PD is a very individualized disease. No two people experience the same set of symptoms, and each person’s disease progresses at its own pace.1

Recognize that Parkinson’s is unpredictable

In addition to being a disease that affects each individual uniquely, PD symptoms and their severity can fluctuate from day to day. The person with PD might be able to walk easily one day, and the next day, they have trouble even getting out of their chair. Recognize that most people are doing the best they can every day.

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The severity of symptoms may also vary throughout the day, as medications wear off. To maximize symptom management, medications should be given on schedule; however, as PD progresses, medications may become less effective or need to be changed.1

Preparing for future needs

As PD progresses, the needs of the patient continue to change. Some of the areas to consider and plan for include:

  • Financial challenges, particularly if your loved one was diagnosed at a younger age (young onset PD) or many years before they planned on retiring.1
  • Home adaptations, which range from small changes or additions to major construction projects, can help make it easier for your loved one to get around and keep up their daily activities.
  • Assistive devices are available that can help make walking, eating, and getting dressed easier for someone with PD.
  • In-home assistance may be covered by your insurance. There are also respite care programs available through PD organizations.
  • Long-term care is often needed at the later stages of PD, when the patient needs help with every area of daily living. There are options for long-term care, including assisted living facilities and skilled nursing facilities. Another consideration is how to pay for long-term care, as it can be expensive.2
  • End-of-life planning includes making decisions about health care, legal and financial decision-making, funeral and memorial planning, and determining what legacy someone wants to leave for others, or how they want to be remembered. End-of-life planning can be difficult for the one dying and for their loved ones. However, by making these decisions ahead of time, the person who is dying can provide helpful information for their families and friends, as well as ensure their individual values are reflected in these decisions.3,4

Accept that changes are coming

As PD progresses, your loved one will need more care, possibly more than you can provide by yourself.

Researching your options before they are needed can provide you with some peace of mind. It’s also important not to hesitate to ask for help from your doctor, a hospital social worker, or friends and family.1