Four years ago at the age of 36, Natasha McCarthy of PEI was surprisingly relieved to find out she had young onset Parkinson’s disease (YOPD). It took 15 months for her doctor and specialist in New Brunswick to make the diagnosis. At the time, she was working fulltime, her daughters were five- and two- years- old and her husband was working in Alberta, with extended visits home to the island.
“I actually thanked my specialist for telling me I was not crazy, when he confirmed my diagnosis,” says McCarthy. “The long and stressful process has you doubting yourself,” she adds. McCarthy also had a grandmother and two aunts with multiple sclerosis, so that possibility was first ruled out. Although her diagnosis wasn’t confirmed until September of 2013, she began taking levodopa in March of that year and it helped with her symptoms.
Blair Sigurdson in Winnipeg had his Parkinson’s diagnosis confirmed six years ago, just before his fiftieth birthday. “But, I think I’d had it for at least 13 years by then,” he says. Sigurdson didn’t experience tremors, but more slowness and rigidity in the years before his diagnosis. At one point he took an extended leave from work, and underwent strengthening therapy that enabled him to return to work. “But once I was back at work, and no longer in the gym so much, my symptoms returned.”
Like McCarthy, Sigurdson had a young family when he was formally diagnosed: a 10-year-old daughter and an eight-year-old son. YOPD presents unique challenges since most people are in the midst of raising families and pursuing careers. YOPD is an unexpected and unwelcome intruder into their busy lives, affecting not only the individual, but the daily lives of the entire family.
McCarthy explains her approach to the unique challenges of YOPD this way: “You and Parkinson’s are going to be together for a very long time. It’s going to be a long, hard road, if you decide to lie down and give up. It’s best to take charge and concentrate on what you can do, not what you can’t.”
Both Sigurdson and McCarthy are proponents of physical activity as part of their self-care. McCarthy horseback rides, and recently completed a five-day, 273 km. cycling event across PEI in support of Parkinson Canada. “It was the hardest thing I have ever done physically, and a lot more emotional that I ever thought it would be. I cried a lot. Not just from the exhaustion of cycling in both heat and torrential rain, but from what I was feeling and the support we received.” The event raised almost $7,000 and garnered plenty of media attention and public awareness.
Sigurdson has also climbed a few mountains – literally. In the last few years, he has tackled trails rising more than 14,000 feet in the mountains of Colorado, with another fellow living with Parkinson’s. “When I was diagnosed, my doctor told me to take my medication and not exert myself. These days we know that physical activity can help alleviate symptoms, so I push myself because it works for me.”
While these two have completed some exceptional feats, they encourage others with YOPD to simply pursue an activity they love and focus on the positive aspects of their lives. They also recommend seeking out a support network beyond family and friends and venture into the Parkinson’s community. “No one knows better than someone with Parkinson’s what you are going through,” says McCarthy.
Blair and Natasha were discouraged when they attended their first support group meetings. Everyone was much older, with more noticeable symptoms. “It was actually terrifying at first to see your future in the flesh,” says McCarthy. Since then, they both came to appreciate the groups and to see their value. And now, both are involved with Parkinson Canada support groups especially for people with YOPD.
In the Maritimes, a group of about 25 people with YOPD or newly diagnosed with PD, meets monthly via videoconference and in Winnipeg the YOPD support group of about 35 members meets in person each month. “Even members who don’t come out often, tell me they feel better just knowing it is there,” says Sigurdson, who is the group facilitator.
He sets up guest speakers for most meetings, often health professionals such as a speech language pathologist, a neurologist and a physiotherapist, to help people live their best life with YOPD. There is also time to share and ask questions of one another. “It helps to know you are not alone,” he says. He also keeps the group informed about other Parkinson Canada resources, like webinars and educational events, that they might find helpful.
McCarthy says the PEI chapter of Parkinson Canada works hard to provide support for people in the area living with Parkinson’s. In addition to a monthly support group meeting, they provide three activity classes each week, including movement, boxing and singing.
Natasha has also been active as a Parkinson Ambassador, meeting with MPs about genetic fairness legislation, which recently passed in the House of Commons. In addition, she was an official blogger for the World Parkinson Congress 2016 in Portland, Oregon. She attended the Congress and was surprised when other participants wanted to have their picture taken with her. “You’re the girl with the blog,” they’d say. Today her blog has almost 140,000 readers and she gets plenty of emails. Natasha finds writing the blog is therapeutic and brings her comfort.
Both Blair and Natasha still face challenges. Natasha admits that giving up work was harder than learning her diagnosis. And when both her daughters boarded the school bus last fall, she felt she could no longer claim to be a stay-at-home Mom. “I felt I’d lost my identity when I had to stop working and then again, I was depressed when both my daughters were at school.” She saw a therapist to help her establish a new routine and get past the crisis. Anxiety and depression are common symptoms of Parkinson’s.
Blair also decided to stop working two years ago. “It got to the point where I could barely function at work and couldn’t do anything with the family. I was in really bad shape.” Now, he drives the kids to school and their activities, exercises, rests, and does his best to avoid stress. “Stress really affects people living with Parkinson’s,” says Blair. “And no amount of medication seems to work when you are stressed.” And both Sigurdson and McCarthy experience sleep difficulties.
This past weekend, both Natasha and Blair took part in Parkinson SuperWalk in their communities in support of Parkinson Canada. They credit their connections to Parkinson Canada with enriching their lives, providing support, education and information and a wide network of friends who understand life with Parkinson’s.
If you or someone you know has YOPD, or is newly diagnosed with Parkinson’s disease, be sure to visit Parkinson.ca for more information. In particular, check out our Young Onset Parkinson’s Disease – Advice for Those Newly Diagnosed, (2nd edition). This booklet was developed from a Parkinson Canada funded research project led by Dr. Mike Ravenek, contains advice directly from individuals currently living with YOPD. There is also a version for health care professionals.