No one knows what the future will bring. Especially when it comes to Parkinson’s Disease (PD), everyone experiences PD differently. There’s no set trajectory that everyone follows. PD is a chronic, progressive disease, which means that it typically gets worse over time. Yet, we don’t know how fast the disease will progress, or what symptoms will or won’t reveal themselves. Some symptoms of advanced PD may never become issues for you. However, for those experiencing the challenges of advanced PD and for their care partners, having reliable information is vital.
So how to you plan for the future, when the future is unknown? The best thing you can do is to educate yourself so you are aware of the possibilities that may lie ahead so you know what to look for and to consider, and so that you are prepared should tougher times come your way. No one wants to think about the tough stuff, but it can be very beneficial to tackle a few of the challenging topics earlier in the PD journey.
The American Parkinson Disease Association (APDA) has a variety of resources to help you learn more about advanced PD. You can pick and choose the topics that interest you the most or seem most relevant to your circumstances – and process the information at your own pace. We hope you find these resources helpful.
Palliative Care for PD: Palliative care is a medical approach for those with complex illnesses, in which the focus is on maximizing quality of life. While it is not just for late-stage disease (it can actually be helpful at any time!) this approach does become more important as the disease advances. In this episode of Dr. Gilbert Hosts, learn more about palliative care, the difference between palliative care and hospice, and more.
Planning for the What Ifs: This introduction to a nine-part APDA blog series about advanced PD is a good starting point that sets the stage and provides some background for the upcoming posts about advanced PD. Some other posts in the series that might interest you are:
- Mental Health Concerns – Psychosis & Behavior Issues: Here we cover mental health issues like psychosis, hallucinations, and behavior issues along with medical and non-medical treatment approaches.
- End of Life & Parkinson’s Disease: An often asked question is: Can advanced Parkinson’s disease lead to death and if so, how? This post looks at the relationship between PD and mortality to shed some light on this common and important question.
- Planning for the Future: Despite the uncertainty of PD there are still things you can do to be prepared and plan ahead. Dr. Gilbert interviewed an expert who has spent her career working with those who are planning for the uncertain future. Read what they talked about.
- Bowel and Bladder Issues: Learn more about urinary dysfunction, abdominal pain, and fecal incontinence in this comprehensive blog post. While not the most comfortable topic to discuss, it’s incredibly important to address these issues with your medical team as they may be able to be improved. They could also be signs of other underlying medical issues and should be addressed promptly.
The Stanford Parkinson’s Community Outreach Program has gathered several downloadable documents, online articles, podcasts and webinars about caring for late-stage PD from the APDA and other organizations. You’ll find them all in our Caregiver Corner, along with information about hiring in-home caregivers, moving to a care facility, palliative vs. hospice care, and more.