Expert Tips for Caring for the Parkinson's Caregiver
Thank you for interviewing me and for asking me to write this blog. Here I share with you five tips from our recent book.
1.Get information from reliable sources.
In today’s world, there is plenty of information at our fingertips. Sometimes, this can feel like a tsunami overwhelming us! It is important to be empowered by good, solid, reliable information to help guide expectations and decision-making. Some websites that can be helpful include the Parkinson Foundation (https://www.parkinson.org/) and the Michael J. Fox Foundation (https://www.michaeljfox.org) among many others. Their websites have content from experts and have both “101”— meaning basic information and also have more specific information that can be helpful over time. The websites provide opportunities to listen to webinars and podcasts about important topics.
The internet may lead to social networks wherein individuals share specific experiences with medicines or other therapies. Be sure to remember that each person is unique, and that the experiences of one person definitely do not generalize to all others.
When it comes to considering investigational and unconventional therapies, discuss these with your physician to learn the pros and cons of each potential therapy and make an informed decision. Be particularly cautious when large price tags are associated with therapies which may be making unproven claims.
2. Understand that not every day is the same, and that symptoms of PD may impact energy and expression.
It can be frustrating when there are days where an individual seems able to have the energy and endurance to do a number of activities, or to accomplish personal or physical goals, and then to encounter another day where he or she seems unable or appears unwilling. It is tempting to blame this solely on personality or motivation, when in fact, Parkinson disease may be variable in its impact from day to day, and from moment to moment. Fluctuations in medication response may contribute. Furthermore, PD can actually change energy, drive, and physical expression of emotion such as facial expression. Try to recognize this is not related to a “diminishment” in love for you.
3. Be ready for the unexpected.
Aware in Care kit- Parkinson’s Foundation
It is always a good idea to keep an updated medication list on hand. Most hospitalizations are unplanned and unexpected, and having this in your wallet or purse can be a valuable asset —should hospitalization occur. It is also useful in routine clinic appointments to be sure your whole healthcare team has an updated list of your prescribed and over-the-counter (daily) pills. This allows for checking of interactions and for being sure a medication is not contributing to particular symptoms.
The Parkinson’s Foundation offers a free “Aware in Care” kit, a hospital kit that can be requested on their website. (You just cover shipping). This kit includes an informational card that lists medications that can aggravate Parkinson disease, and also includes safer alternatives. Sharing this with healthcare providers can help to avoid unnecessary worsening of PD symptoms. Furthermore, the card documents the importance of getting your medication on time every time. There are other resources such as a “nurse fact sheet” which is provided as part of a tear off pad as well as a hospital action plan, and more…..
November is National Family Caregivers Month! We are so grateful for all the unsung heroes that stand side-by-side with those living with Parkinson's disease (PD) on a daily basis.
One very important aspect of being a great care partner, is being sure to pay attention to self-care as well. One cannot support another person for the long haul without keeping strong as well.
We had the honor of sitting down with neurologist Dr. Irene Malaty from the University of Florida Norman Fixel Institute for Neurological Diseases and to get her tips for caregivers based on her recently published book.
4. If possible, attend appointments together.
When feasible, it can be very helpful to attend clinic visits and therapy sessions together. Four ears are better than two! When instructions and options are discussed, it can sometimes be overwhelming. Many times, it can be hard to absorb and recall everything that is discussed. Sometimes questions a person intends to ask slip from the memory at the time of the appointment— especially in light of everything that gets discussed. We recommend making a list of your top three questions to help ensure the visit addresses your needs. Don’t be afraid to ask questions! Also, know that observations of a loved one can be very helpful to supplement those things an individual is able to recognize in his or her own walking, movements, and daily function.
5. Be kind to yourself!
We are all learning together, as we go! You are likely experiencing Parkinson disease for the first time, or at least experiencing this individual’s course of PD for the first time. Emotions are completely normal, and these may range from anger, to sadness, and even to resentment or guilt— some of the time. Allow yourself to be human, and know that PD changes over time and your experience may evolve as well.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonBedside and https://www.tourettetreatment.com/
He also serves as the Medical Director for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.