Embracing Vulnerability in Parkinson’s

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by Jo Gambosi |

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If you ask others what vulnerability means, they’ll often respond with something that implies weakness.

Many people affected by Parkinson’s disease (PD) may believe the falsehood that they no longer are enough of a person because of their vulnerability.

Caregivers and family members of people with Parkinson’s also might define vulnerability in terms of how the care provided might not seem like enough. I know that as a caregiver, I have felt inadequate and impatient at times when it comes to understanding my sister Bev’s decreasing physical and mental capacities.

She has mentioned to me that, “I used to be able to do echocardiograms. Now I can’t remember dates for appointments. I wobble when I walk. I am so weak.”

But what if we embrace our vulnerability?

Empathy writer and researcher Brené Brown, PhD, noted in a TED Talk that there is power in vulnerability.

“We can’t know things like love and belonging, creativity, and joy without vulnerability,” she said.

According to author Odin Halvorson, being vulnerable means something else — something positive — when it’s connected with human flourishing.

An article in Nursing Philosophy noted that those living with chronic illness, along with healthcare providers, “may be regarded as more vulnerable than people who do not suffer or witness suffering on a regular basis.” 

My belief is that being vulnerable is part of being human, and it is connected to being dependent on one another. My relationship with Bev and her relationship with others can either increase or decrease her feelings of vulnerability. Bev, who has stage 3 Parkinson’s, understands that she is now more dependent on others, including her healthcare providers and caregivers, for doing things in life, so she feels more vulnerable in a negative sense of the word.

But can she change her negative mindset about vulnerability to a more positive one in which living with illness might contribute to personal growth and development?

Can having a more positive outlook about being vulnerable also help me, as one of Bev’s caregivers, as well as helping her healthcare providers by increasing the understanding? 

Bev and I talked about vulnerability and how she strives to “carry on.” We needed to find solutions to specific challenges and reverse the negative connotation of vulnerability in her PD. We needed to embrace it. But what does embracing vulnerability look like?

One study published in the International Journal of Qualitative Studies on Health and Well-being explored the experiences of various people living with a chronic illness. Researchers found in their subjects’ stories that they had different capabilities depending on their condition, and their challenges while living with chronic illness could be made less severe and viewed as positive resources instead.

Bev and I found these patient stories interesting, and we thought of ways she could embrace her own vulnerability. We made a list of the ideas.

Bev could get to know herself better by focusing on the strengths that she still has. For example, she is compassionate about others, she can still give wise advice, and she can journal, although she has some difficulty writing, etc. 

Bev could integrate her illness into everyday life by scheduling activities that require more physical and mental effort earlier in the day.

Embracing the idea of vulnerability as common to all of us as human beings who are dependent on one another would help her to focus on her remaining abilities rather than on physical weakness or a declining memory.

Coming to terms with a changed life would encourage her to be open with others about her illness and help increase the support from caregivers at home and from friends.

Despite the seriousness of her disease, Bev continues to call upon both her internal resources, such as her strengths, and her external ones, such as her caregivers, healthcare providers, and supportive friends and family members to help her have a positive outlook on her life and future.

As her sister, I need to understand Bev’s desire to maintain independence, have care that meets her needs, be seen and understood in a way that works for her, and have her choose her way to see possibilities in life. Listening to Bev — really listening, despite her slow speech — will help me and others know that those affected by PD can find their own ways of carrying on with life despite having PD.

A columnist at SMA News Today, Alyssa Silva, expressed how she felt about vulnerability, which captures everything Bev is trying to say, and what I and others need to understand: “In getting more vulnerable with the world and admiring others who do the same, I now understand how stories play a pivotal role in our lives. It’s the thread that weaves us together to create a community. It’s the moment when loneliness and all its emotional baggage are replaced with belonging and acceptance.”

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Awilda Harrington avatar

Awilda Harrington

Excellent article written with knowledge and compassion.
Lessons and advice intended for the subject of PD yet we can carry them with us while helping our loved ones with other debilitating deseases such as ALS.
Thank you to the talented author Jo Gambosi
Awilda Harrington

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