Journaling Can Help Those With Parkinson’s Build a Legacy

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by Jo Gambosi |

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Journaling can be therapeutic for all of us. For someone with a chronic illness like Parkinson’s disease, storytelling by way of writing can leave a legacy for friends and family, and it can even change a person’s perspective about facing illness.

In explaining why she decided to keep a journal, Lori DePorter, a fellow columnist at Parkinson’s News Today, wrote in a recent article for the Davis Phinney Foundation that, “I wanted to share my thoughts without actually talking about them. Journaling became a safe outlet, allowing me to express my true thoughts without burdening anyone and without judgment.”

My sister Bev, who has stage 3 Parkinson’s disease, occasionally writes in her journal. She used to write weekly, but as her Parkinson’s progressed, she noticed that her writing had changed by becoming smaller and “scratchier looking,” as she describes it. (Diminished writing size in Parkinson’s is known as micrographia.) Bev’s hands also sometimes shake.

Despite these physical challenges, Bev decided a few years ago to use journaling as a type of storytelling memory book about our sister Marie, who died in her 40s. Bev wanted to leave a legacy about growing up with Marie for Marie’s daughter, Louann, who was relatively young when her mom passed away.

According to Legacy Project founder Susan V. Bosak, “Legacy is fundamental to what it is to be human. Research shows that without a sense of working to create a legacy, adults lose meaning in their life. Exploring the idea of legacy offers a glimpse not only into human relationships and building strong communities, but also the human spirit.”

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Is Journaling for You?

Benefits of journaling

Journaling is also a great way to reduce stress, anxiety, and depression, and may even offer physical health benefits as well. A 2005 study titled “Emotional and physical health benefits of expressive writing,” published in the journal Advances in Psychiatric Treatment, found that participants who wrote about their stressful life happenings had improved health outcomes compared with those who wrote about neutral topics.

Other benefits of journaling include improved working memory and a strengthened immune system. Believe it or not, journaling and expressive writing have also been shown to improve liver and lung function, and they can even help wounds heal faster!

It took Bev two years to finish journaling in her memory book. She included pictures of herself, my sister Marie, and Marie’s daughter, Louann, as an infant. When Bev gave Louann the journal, Louann said she appreciated the effort Bev had made, particularly given Bev’s Parkinson’s challenges and the concentration it must have required to compile so many thoughts and memories. It is a gift my niece will always treasure.

Thinking about legacy might help when facing Parkinson’s disease. Sharing memories, personal values, and life lessons by journaling can leave an imprint on others while helping to improve a person’s individual outlook.

Do you keep a journal? What types of benefits have you seen from journaling? Please share in the comments below.

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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.

vicki feaver avatar

vicki feaver

I was diagnosed with Parkinson's in 2020. I keep a journal and write poems about it. . it really helps me deal with it and so far 3 of the poems have been published - so I get a rewarding feeling that I am reaching out to others about my experience. You can find one called 'Ode' on the Forward Foundation's Poetry Day pages in which I describe the process from seeing Parkinson's as an enemy to regarding it as a friend. I'm hoping there will eventually be enough poems to make a book.

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