Real Talk from Patients

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“Living Well With This Illness Requires Partnerships”

January 6, 2022

Team Fox community member and guest blogger Allan Cole alongside his wife Tracey Cole.

If having Parkinson’s disease (PD) has taught me anything, it’s that living well with this illness requires partnerships. One essential partnership is between a person with Parkinson’s (PwP) and a care team. An ideal care team is headed by a neurologist (preferably, a movement disorder specialist) and includes a range of other professionals. Speech therapists, physical therapists, nurses, fitness coaches, mental health professionals, social workers, home health aides, clergy members and others can have a significant, positive impact on a PwP’s quality of life. When the individual’s quality of life improves, so do the lives of those who love them. Managing a formidable illness such as Parkinson’s requires a concerted, coordinated effort.

But as important as any professional partner remains, no one provides more of what we need to live well with PD than our closest care partners. Typically, these care partners include spouses, children, siblings, parents, and close friends. Whether our needs are physical, emotional, or spiritual, we fare best over time when we invite the people closest to us, those we love most and with whom we share our lives, into the experience of living with Parkinson’s. We do best when we are open to receiving their offers of care. 

Of course, serving as a care partner to a PwP presents its own challenges. Caregiver fatigue is common in anyone helping a loved one manage the demands of Parkinson’s while also seeking to live their own life. Consequently, it remains vital for care partners to practice self-care. It’s crucial that they find opportunities for respite, renewal, and that they have people and activities in their lives that bring them joy.

Living with any chronic illness gets more difficult over time and living with Parkinson’s is no exception. Perhaps, more valuable than anything else is the comfort that care partners offer PwP’s—physically, emotionally, even spiritually. When we can trust another human being to support us, and especially as we require more support, it offers an unparalleled measure of comfort. But here’s the key. Offers of comfort can, and should, go both ways; reciprocity is the basis for a balanced, healthy partnership.

Those of us with Parkinson’s are vulnerable to believing that we are limited to receiving offers of care, when in fact we can and should extend our own offers of care to others, including our care partners. We do this by staying emotionally present, maintaining a clear investment in living well and staying active (whatever forms being active may take), and by renewing our commitments to others, whether as a spouse, parent, sibling, friend, or adult child. We extend care to others when we resolve daily to live and to hope, especially on those days when nothing seems more difficult to do. The alternative, not making these types of commitments, allows Parkinson’s to take from us even more than it already does.

If you’d like to learn more about caregiver perspectives, you can visit the PD Wise YouTube channel, and hear from four care partners to men diagnosed with young-onset Parkinson’s disease: Heidi Bucklew, Cherryl Choi, Tracey Cole, and Katharine Parker.
                                        

Comfort

When illness begins,

Hearts ache and

Souls grow heavy.

With time, the infirm learn

A heart is resilient and

Souls can shed weight.

Comfort is the way.

Those we love may comfort us.

We may comfort them.^[1]

Check out The Michael J. Fox Foundation’s resources on building a care team here. And access the Foundation’s free downloadable guide, “You, Your Loved One and Parkinson’s Disease,” for tips about Parkinson’s and relationships and how to balance caring for a family member and yourself.  

Allan Cole is Deputy to the President for Societal Challenges and Opportunities at The University of Texas at Austin, where he also serves as a professor in The Steve Hicks School of Social Work, and, by courtesy, as a professor of psychiatry and behavioral sciences at the Dell Medical School. Diagnosed with Parkinson’s in 2016, at the age of 48, he is the author or editor of many books on a range of topics related to bereavement, anxiety, and spirituality. His latest books include, Counseling Persons with Parkinson’s Disease (Oxford University Press, 2021) and Discerning the Way: Lessons from Parkinson’s Disease (Cascade, 2021). His first book of poetry, In the Care of Plenty: Poems (Resource Publications), will be published in 2022. Follow him on Twitter @PDWise, and his blog PDWise.com. 

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^[1] Allan Hugh Cole Jr., “Comfort,” In the Care of Plenty—Poems(Eugene, OR: Resource Publications, 2021), 47.

• Allan Cole