Guest Voice: When the caregiver becomes the one in need of care
How a Parkinson's diagnosis at the age of 52 disrupted this family's dynamics
Rosalba Mancuso is a bilingual freelance journalist based in Sicily. Writing in English and Italian, she has contributed to national magazines and newspapers for over 30 years, as well as international publications. She also dedicates her writing to spreading awareness about living with Parkinson’s disease.
Getting Parkinson’s is not an enjoyable experience for anyone, particularly when you’re young. It’s not something that’s predictable, either.
My symptoms began appearing in late 2021, when I was in my early 50s. That’s supposed to be an age when we’re still active and can take care of our families.
At the onset of my Parkinson’s, I’d recently recovered from COVID-19 and thought the slight hand tremors I was having were a symptom of long COVID-19. I believed they’d eventually go away. Unfortunately, that didn’t happen, and instead, they worsened, resulting in my terrible diagnosis in June 2023.
The results of a Spect Brain DaTscan, a nuclear imaging test that allows doctors to look at brain function, were merciless: I had Parkinson’s disease at age 52.
I’ve always been an energetic and lively woman, adept at multitasking and balancing home and work duties. However, with the arrival of Parkinson’s, that abundance of energy abruptly ended.
The most traumatic part about this condition is the total transformation of my daily routine, especially when it comes to taking care of my family, and my 80-year-old mother in particular. She is a widow and has relied on my help since we lost my beloved father to cancer over 20 years ago.
As she aged, her care needs became more evident. She doesn’t drive, so before Parkinson’s appeared in my life, I was happy to take her to the local market or the cemetery to visit my dad’s grave. My car has always been a symbol of independence for me and a way to take care of my mom. But Parkinson’s deprived me of that important part of my independence.
Since my diagnosis, I haven’t been able to drive. My mom doesn’t get out of the house often, and sometimes she’ll still ask me if I feel good enough to drive, which breaks my heart.
Instead, I’m trying to encourage her by having a positive attitude about my health condition, even when my symptoms are obvious and they upset me. She’ll see me leaning on a wall and ask why I’m doing that. I’ll reply that I’m just exercising to strengthen my back. The truth is that I’m experiencing dizziness, vertigo, and leg weakness, but I don’t want her to know how severe my symptoms are.
However, that can’t always be avoided. One time, my shoulder froze up and I couldn’t get out of bed or go to the bathroom. While my husband was at work, my mother helped care for me, which exhausted her.
I get tired very quickly, so my husband helps out when he’s not working. Parkinson’s has turned our family’s relationship into a triangle of mutual support. I help my mom when she needs me, and my husband helps me when I need it.
Parkinson’s has changed my life forever. Every new symptom is a challenge. But I’ve learned that while Parkinson’s can change the way you move, it can’t change the way you love.
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About the Author
Lidia Musat
I wish you a lot of courage! My husband has had Parkinson's since 2020, when he was 47 years old and the tremor moved from his feet to his hand, but he still drives, although there are days when the tremor is very pronounced. He somehow found a way to control his muscles when he drives, I don't know how, but maybe because he never stopped driving (although he had panic attacks at first and stopped the car until he calmed down).He still spends a lot of time in the garden and sets himself all sorts of goals. Between doses of levodopa he takes Mucuna pruriens powder, which is natural dopamine and helps him not to increase the chemical doses. It is very important, I think, not to think about the disease and to always have something to do.