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Living With Parkinson’s Disease (The Caregiver Edition)
Parkinson’s disease is a progressive, neurodegenerative brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination (Robinette, Charles, et al, 2018). Symptoms usually begin gradually and worsen. Overtime individuals may experience mental and behavioral changes, memory loss, fatigue, sleep problems, and depression. PD is most common in men aged 60. However, early onset of the disease can begin at the age of 50 (Robinette, Charles, et al, 2018).
Families Coping with Parkinson’s Disease
Parkinson’s Disease like any other chronic illness manifests many physical and psychological challenges, this can be incredibly hard on the family. Along with the affected individuals, the family has to also deal with change and adapt to this new lifestyle that comes along. It can be emotionally devastating to see a family member suffer and having to support and care for them throughout (WHP, 2017).
Family members of individuals with PD have their work cut out for them. Caregivers and family take part in:
- Maintaining quality of life
- Keeping updated on disease progression, symptoms, treatment and challenges.
- Offer love and support
Maintaining Quality of Life
It is a crucial part of maintaining quality of life even after being diagnosed with PD that affected individuals to understand that they are not alone in this journey. The family should actively be apart of the affected family members' daily life. Involvement can range from different activities such as going for a walk, watching television, taking a trip to the grocery store, or even doing laundry (WHP, 2017). As long as some involvement is there from the family it can act as a temporary relief from symptoms and enhance quality of life (WHP, 2017)
Keeping Updated on Disease Progression, Symptoms, Treatment and Challenges
Many symptoms of PD are almost invisible these include fatigue, anxiety and depression (Ryerson, 2015). Most of the time it is not immediately apparent that your loved is suffering as it may be internal symptoms. Having frequent conversations about how your loved one feels and what has changed or progressed within their illness is key. This keeps family members in the loop and allows them to accommodate for long-term care.
Offer Love and Support
Doctor’s appointments, support group meetings, communicating with children and other family members can all be very overwhelming. It is a good idea to have and bring a caregiver along to listen and take part in certain situations. For example, it may be a good idea to take your spouse along to a doctor’s appointment as she or he will have a better idea about any mood or behavioral changes and concerns (Ryerson, 2015).
A poem describing Jane Davis’ experience with Parkinson’s disease when her husband, Gary, was diagnosed
your body slowly deteriorating
not daily, not weekly,
but it is there.
I compare to a year past
and then I know,
your body is betraying you.
our children don’t want to admit.
To them, you are the superhero
one that can do anything
Maybe that is how it should be.
I watch you move and sway,
I watch you struggle to button,
I watch you walk with your bent back,
I watch you grimace in pain.
I watch your hands tremor,
I watch those many trips to the bathroom
I watch you take your medications
throughout the day
too many to count.
I watch you keep going
fighting back that pain and stiffness
I love your drive
I love that you never give up
I love that you refuse to slow down
I watch you with admiration and love.”
(Parkinson’s Foundation, 2018).
As the poem portrays PD is a rough journey that needs a strong will and strong supportive caregiver. Have any of our readers created any other poems? We would love to read or hear them. Reach out via our Facebook page
External Support Resources
We sometimes forget to keep in mind that PD takes a toll on the caregiver and family. Support is also needed for those providing care to their loved ones. Families no longer have to cope with Parkinson’s disease alone. Many support groups, charities, and educational material and aid are openly available. Here is a shortlist that our team has found to be greatly supportive:
Medicare Coverage for Parkinson's Disease - Healthline
Caring in a Family with Parkinson’s – Parkinson Canada
The Emotional Side of Caregiving: Parkinson’s Caregivers Share Advice – Michael J. Fox Foundation
Parkinson’s Disease and Caregiving – Family Caregiver Alliance
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Parkinson’s Foundation. (2018). How to Cope with Parkinson’s as a Caregiver. Retrieved from http://parkinson.org/Find-Help/Blogs/Caregiver-Corner/How-to-Cope-With-Parkinsons-as-a-Caregiver
Michael J. Fox Foundation. (2018). Support & Caregiving for Parkinsons Patients: The Michael J. Fox Foundation. Retrieved from https://www.michaeljfox.org/understanding-parkinsons/supporting-caregiving.php
Robinette, J. W., Charles, S. T., & Gruenewald, T. L. (2018). Neighborhood cohesion, neighborhood disorder, and cardiometabolic risk. Social Science & Medicine, 198, 70-76. doi:10.1016/j.socscimed.2017.12.025
Ryerson, N. (2015). Parkinson’s Disease and Your Marriage: Advice from Our Community. Retrieved from https://www.michaeljfox.org/foundation/news-detail.php?parkinson-disease-and-your-marriage-advice-from-our-community
Senelick, R. (2016). Coping Tips for Caregivers of Those With Parkinson’s Disease. Retrieved from https://www.webmd.com/parkinsons-disease/guide/parkinsons-caregivers#1
WHP. (2017). We Have Parkinson’s. Retrieved from https://wehaveparkinsons.com/things-family-members-should-know-about-parkinsons/