Parkinson’s support group founder shares her caregiving journey
Dog nutritionist, author has learned life lessons that go far beyond disease
I joined a caregiver support group a few years ago, and we meet monthly via Zoom. We are a group of spouses discussing the challenges of caregiving, life, and living with Parkinson’s disease.
Our leader and founder is a lovely lady named Diana Dunetz. I was lucky enough to stumble across the group in the Parkinson’s News Today Forums.
Although Diana and I have a lot in common since we are both spouses of husbands who were diagnosed with Parkinson’s disease, our stories are still very different. I had the pleasure of interviewing her in recognition of National Family Caregivers Month to get another perspective on the caregiving journey.
Diana and her husband, Rodney, reside in both Florida and Georgia, depending on the time of year. She grew up on the East Coast, just outside of Boston. After earning her undergraduate degree in English literature from Tufts University, Diana became a writer for several dog magazines. She later received a master’s degree in animal science, becoming a dog nutritionist. She has authored three books related to dog health and nutrition, and is currently writing a long-awaited mystery novel.
Feeling ‘cautiously optimistic’
Rodney was diagnosed with Parkinson’s in the fall of 2019. In retrospect, Diana said that his symptoms had been going on for quite some time before his diagnosis. Some of his symptoms included changes in his speech, masked facial expressions, small and erratic handwriting, tremor in his right arm, and his right arm feeling like a dead weight.
Before his diagnosis, Rodney was seen by several medical specialists who searched for answers to why he was experiencing these symptoms. None of them was able to determine the cause.
His next step was to see a neurologist. Because of the long wait time to see the physician, he was seen by a nurse practitioner instead. The nurse ordered a DaTscan, which was consistent with Parkinson’s disease.
Diana described her intense feelings of denial after the diagnosis was made. She didn’t have any experience or knowledge of Parkinson’s disease, other than seeing the actor Michael J. Fox, who has the disease, on television.
Her mother was a tremendous support, encouraging her to stay positive and spread that positivity to Rodney as well. Just a few months after Rodney’s diagnosis, Diana’s mom passed, which was devastating, especially during this incredibly difficult time for Diana. She continues to stay positive to honor her mother’s spirit every day.
Rodney is very self-sufficient and doesn’t require any physical assistance from Diana at this point. Diana’s goal is to support Rodney emotionally and help him stay hopeful.
I asked Diana how her feelings have evolved now that it has been over five years since his diagnosis. She told me that she is now feeling “cautiously optimistic.”
Meet your partner ‘where they are today’
We discussed our wonderful support group and how she started it. She had been actively reading the Parkinson’s News Today Forums and saw a need for consistent and predictable support for spouses and caregivers of patients with Parkinson’s disease. She posted about her idea to start a monthly support group, and there was immediate interest.
In the five years that Diana has been facilitating the group, she has been amazed at what she has gained from the monthly meetings. Beyond a greater understanding of the progression that she can expect from her husband’s Parkinson’s, she stated that “the life lessons learned go far beyond Parkinson’s disease.” Diana described learning about inner strength, unconditional love, marriage, and determination.
Diana feels it is important to appreciate each day, and to meet your partner with Parkinson’s “where they are today.” She also thinks that planning for the future and learning about Parkinson’s is essential.
Diana says that starting this support group has been one of the best things that she has done since her husband was diagnosed. She encourages all spouses and caregivers, regardless of age or stage, to consider joining or starting a support group. My favorite takeaway from our conversation was when Diana reminded me that “there is life after a Parkinson’s diagnosis!”
Caregiving comes in all shapes and sizes, and with Parkinson’s, it is constantly changing and evolving. For now, Diana cares for Rodney’s sense of well-being with empathetic emotional support. She described feeling like a “fraud,” as she is not at the stage where her husband requires physical assistance. In my opinion, Diana is the real deal and is certainly not a fraud. Emotional support is just as important as physical support.
Thank you, Diana, for taking the time to discuss your caregiver journey.
If you are a caregiver, remember to care for yourself by taking breaks and nurturing your own health whenever possible. Consider adding a support group to your self-care toolbox, as a little bit of support goes a long way.
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.
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