navigating life with Parkinson's disease: Linda Boulton's journey
For several decades, Linda Boulton, a former dance teacher, and her husband Steve, a retired teacher, lived an active and fulfilling life in Newcastle. Their relationship began in their teenage years when Steve, a football enthusiast, joined Linda's dance class to improve his footwork. As their bond deepened, their shared passion for dance grew into a romantic affair, leading to marriage at the age of 25.
During the next 20 years, the couple raised two daughters and continued to lead an active lifestyle. However, in his mid-40s, Steve developed an issue with one arm, displaying symptoms of nerve damage. After two general practitioners failed to diagnose him, he sought the help of a neurologist, who eventually diagnosed Parkinson's disease.
The diagnosis came as a shock to the couple, who were active and engaged in various sports. Linda recalls feeling disheartened as she worried about Steve's condition progressing rapidly while he was still so young. He initially kept the diagnosis a secret from others, continuing to work as a teacher.
As Steve's symptoms worsened over the years, he experienced psychosis, foot cramps, and panic attacks. Unable to manage on his own, he was forced into retirement due to a psychotic episode. Linda, who had been organizing his appointments and medications, found her role transition from partner to caregiver increasingly demanding.
In the following years, Steve's behavior became erratic, and he developed dementia. Linda became responsible for all aspects of his life, from daily care to advocating for government assistance. She found it increasingly difficult to maintain her part-time job and care for her husband. In a span of four years, their normal lives had significantly changed, with their two daughters still dependent on them.
Despite the challenges, a Deep Brain Stimulator unit was fitted to Steve to help manage some of his symptoms. However, the disease and its medication continued to impact his behavior and affect his cognitive function. Eventually, Steve was admitted to a care facility, forcing Linda to grapple with feelings of guilt. She would visit him daily, but felt overwhelmed as she struggled to balance her responsibilities with her own emotional well-being.
Linda decided to draw strength from her situation and began writing a memoir titled "Pas de Deux, a Carer's Story." The book offers an honest account of her life as a Parkinson's caregiver and aims to offer support and solace to others in similar circumstances. It is available through Ginninderra Press and online retailers like Amazon, Booktopia, and eBay.
In her memoir, Linda cautions new caregivers about the emotional toll of caring for a loved one with Parkinson's, emphasizing the importance of finding time for personal pursuits to cope with the challenges of caregiving. Despite the difficult journey, she views her role as a labor of love and a means to discover strength she never knew she had.
Steve and Linda joined local support groups for individuals dealing with chronic diseases, especially those affected by Parkinson's, to gain insight and connect with others in similar situations. Recognizing the importance of maintaining wellness during challenging times, Linda turned to science and health-and-wellness practices to manage her own emotional and physical well-being, while also researching the latest medical-conditions treatments for Steve, particularly advancements in the field of the treatment of Parkinson's disease.
