Natasha McCarthy of Mount Albion says she will not stop being busy even though she is battling Young Onset Parkinsons. She is determined to give as much energy and attention as possible to her daughters Samantha and Izabella.
©THE GUARDIAN/Jim Day
Natasha McCarthy, 37, who was diagnosed with Young Onset Parkinsons last fall, is attacking the disease with words and action.
Natasha McCarthy wakes up every single morning wondering if a good day or a bad one lies ahead.
Parkinsons Disease is the decision maker.
At times the disease is quite manageable. Other times the disease can be debilitating.
“One day I can barely leave the house, the next day I can go horse back riding,’’ says McCarthy.
“And thankfully I have more good days than bad days because I take care of myself.’’
McCarthy, who turns 38 in October, was diagnosed with Young Onset Parkinsons in September 2014.
By this time, she was experiencing a growing list of physical and health issues: a slight tremor in her right hand, severe headaches, loss of fine motor skills, bladder problems, and even a loss of her sense of smell.
Learning that the accumulation of all these ailments was due to Parkinsons Disease — a brain disorder that worsens over time — was like a kick in the gut.
“I didn’t know anything about Parkinsons,’’ she recalls.
“Like most people, I thought it was an old person’s disease.’’
Suddenly, it was her disease.
Parkinsons is now like a heavy shadow constantly cast over McCarthy. It follows her everywhere, weighing her down.
She was forced to leave her rewarding job as general manager of Anne of Green Gables Chocolates.
She relies on a cleaning lady to keep her Mount Albion house in order.
Her once confident, booming voice has moved towards a quiet tone that often has her two young daughters and her husband, Aaron, straining to hear. Aaron tells her she now mumbles.
Doctors are not willing to make predictions about the pace and level of progression of the disease for McCarthy.
“Everybody is so different it’s hard to predict,’’ she notes.
“The only thing you know for sure is it is a progressive disease...you are going to get worse.’’
McCarthy is doing all in her power to slow the progression.
She says exercise is the only proven way to do so. So she rides a horse once a week, bikes, runs and takes part in movement classes put on by the Parkinsons Society.
“I call it a fear-based motivation,’’ she says.
McCarthy is determined to get the most out of her ill body each day, striving to be the best mother possible to seven-year-old Samantha and Izabella, who turns four in December.
The girls are busy. They are demanding of McCarthy’s attention and energy, especially when Aaron is away for average stretches of six to eight weeks working in Alberta.
McCarthy struggles to keep pace.
“There’s days I’m completely worn out or exhausted,’’ she says.
“It’s okay to crash but I’m not going to stop being busy either.’’
McCarthy is also focused on raising both awareness and funds to help attack a disease that has turned her life upside down.
A blog detailing her battle with Parkinsons has had 12,000 views, and was featured on the Michael J. Fox Foundation web site. She has a global audience.
She sits on the board of directors with the Parkinson Society Maritime Region and volunteers with the P.E.I. Chapter.
“Natasha has been an inspiration to all of us within the Parkinsons community,’’ says Dan Steele, president of the P.E.I. chapter of the Parkinson Society Maritime Region.
“She encourages people with the disease to stay physically active while educating everyone about Parkinsons in general. She shares the challenges she faces as a young person with family to take care of. With most people regarding Parkinsons as a disease unique to the elderly, her stories resonate with an different audience that can see themselves in her shoes.
McCarthy is also one of the top fundraisers heading into this month’s Parkinson Superwalk.
Her Superwalk team of 14 includes her sister, Nadine Williams, who takes on the role of enthusiastic cheerleader.
But in McCarthy’s ongoing, and overall, battle with Parkinsons, her husband Aaron is the biggest supporter of all.
When she was diagnosed with Young Onset Parkinsons, Aaron said: “It’s okay. We’ll get through it - in sickness and in health.’’
Did you know?
Parkinsons Disease is a brain disorder that worsens over time.
Symptoms generally appear at age 60, but can appear in much younger people.
There is an estimated 8,400 Maritimers living with Parkinsons.
To date, there is no cure for the disease.
Super support for Superwalk
The Parkinson Superwalk, has raised more than $31 million since it started in 1990.
Funds go towards support services, advocacy, education and research.
P.E.I. hosts two separate Superwalk events: the first on Sept. 12 in O’Leary at Centennial Park and the second on Sept. 13 in Charlottetown at the HMCS Queen Charlotte.
At both events, registration begins at 1 p.m. with the walk starting at 2 p.m.
For more details, go to parkinsonsuperwalk.ca.