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 adopt 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).

qaulity of life

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

(Senelick, 2016)

Maintaining Quality of Life

It is a crucial part of maintaining quality of life even after being diagnosed with PD that affected individuals 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)

(Ryerson, 2015)

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

Watching 

“I watch
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.

Friends notice
family too,
our children don’t want to admit.
To them, you are the superhero
one that can do anything
build anything
fix anything.
Maybe that is how it should be.

I watch you move and sway,
Darn medications.
Darn disease.
I watch you struggle to button,

Darn disease.
I watch you walk with your bent back,
I watch you grimace in pain.
Darn disease.
I watch your hands tremor,
Darn disease.
I watch those many trips to the bathroom
Darn disease
I watch you take your medications
throughout the day
too many to count.
Darn disease
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 to 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 short list that our team has found to be greatly supportive:

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 CaregivingFamily Caregiver Alliance

References

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 Parkinson’s 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 riskSocial 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/

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