Living a good life with YOPD

Natasha McCarthy with her husband Aaron and daughters Samantha and Izabelle, as Natasha’s Ninja’s at Parkinson SuperWalk 2016.
Natasha McCarthy with her husband Aaron and daughters Samantha and Izabelle, as Natasha’s Ninja’s at Parkinson SuperWalk 2016.

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.

Blair Sigurdson (front row, far right), Marc Pittet, Blair’s daughter Jenna, his wife Karren and his son Tyler at Parkinson SuperWalk in Winnipeg, earlier this month.
Blair Sigurdson (front row, far right), Marc Pittet, Blair’s daughter Jenna, his wife Karren and his son Tyler at Parkinson SuperWalk in Winnipeg, earlier this month.

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.

Using electrical activity in the brain to overcome freezing

Assistant Professor Caroline Paquette
Assistant Professor Caroline Paquette

Although most of us take it for granted, turning while we walk is a complicated job. Our brains must calculate where to place our feet, and how to adjust and maintain our balance when we shift direction – all in a split second.

For some people with Parkinson’s disease, turning often results in freezing. Without warning, they find themselves rooted in place. They cannot simply will themselves to move forward.

At McGill University, Caroline Paquette, an assistant professor in the Department of Kinesiology and Physical Education, is trying to determine what regions of the brain are affected in people with Parkinson’s disease who experience freezing. She’s using Positron Emission Tomography (PET) to scan the brains of people with Parkinson’s after they have walked through a series of obstacles that require turns. Her research is being funded by a two-year, $90,000 New Investigator Award from the Parkinson Canada Research Program.

“We know that turning is complex walking, and it’s a huge trigger for freezing,” Paquette says. “It’s quite a big problem in people with Parkinson’s disease, because if your mobility is affected, it affects your quality of life and independence.”

To discover how to overcome freezing, Paquette must first understand what mechanisms in the brain are involved. Before the people in her study begin walking, Paquette and her team inject them with a small radioactive tracer. After they have completed their walking and turning task, technicians scan their brains to see what areas the tracer has lit up, indicating increased activity.

By studying those brain scans of people with Parkinson’s who freeze while walking, as well as the scans of people with Parkinson’s who are not affected by freezing, and comparing those images to scans from people without Parkinson’s disease, Paquette hopes to identify the specific areas of the brain that turning activates.

Paquette will then use another non-invasive technology, called Transcranial Magnetic Stimulation, to stimulate those areas of the brain that seem under-utilized in people who are experiencing freezing.

Coupling TMS, which involves using magnets to create electrical activity in the brain, with current rehabilitation regimes might reduce or eliminate freezing, Paquette believes.

Rehabilitation is already somewhat effective in reducing incidents of freezing, Paquette noted.

“With training, we know that you can get people to have fewer debilitating freezing events, to use other cues on their own and to rely less on the environment. If you are able to use Transcranial Magnetic Stimulation on top of that you could get results faster and maybe have longer-lasting effects,” Paquette says.

If Paquette can prove her theory, her research would open up new areas of treatment and reduce the isolation, anxiety and fear of falling that plague those people with Parkinson’s disease who never know when they will find themselves stuck and unable to move.

For Paquette, this Parkinson Canada grant comes at a critical time because the study will help launch her reputation and her research.

“This is the key for me to build the basis for my lab and my research program so we can get funding to make better treatment interventions available for people with Parkinson’s disease, to improve their mobility.” Paquette says.

Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

You should be dancing

Dancing for Parkinson'sTake a cue from the Bee Gees’ hit song and consider taking a dance class especially designed for people living with Parkinson’s disease (PD). No need to mimic John Travolta in Saturday Night Fever, these dance classes are modified to be safe and effective for their participants with PD, as well as their spouses or care partners, while offering the joy of dance and all the benefits of moving to music.

AB (Alice Betty) Rustin has been taking a Sharing Dance for People with Parkinson’s class at Canada’s National Ballet School for three years now and a Dancing with Parkinson’s class in the city as well. “It’s always great to spend time with others with Parkinson’s,” says AB. “And I feel better after a class. The movements are not as strenuous as in an exercise class. They are much more fluid. And, you’ve got the wonderful music.” (Watch CBC TV segment on dancing and Parkinson’s here.)

Research indicates that dance is an effective, complementary therapy, for those living with Parkinson’s disease, according to Rachel Bar, Manager, Health and Research Initiatives, at Canada’s National Ballet School, in Toronto. “More than 40 research studies have established its benefits,” she says.

Indeed, several Parkinson’s researchers funded by the Parkinson Canada Research Program, have studied the benefits of dancing for people with Parkinson’s, from symptom relief to improved mood and quality of life. One of these researchers Joseph DeSouza conducts studies with participants at the Sharing Dance for People with Parkinson’s class and Dancing with Parkinson’s classes.

Research on dancing and Parkinson’s shows that improvements in balance and gait last long after dance classes end. DeSouza also wants people to know that dancing has other positive benefits. “All the other dance classes that take place all over the world show that people feel better – they’re happier,” DeSouza says. “It’s almost like a supplemental therapy that helps them cope with whatever they’re dealing with.”

Across the country, dance classes for people with Parkinson’s are gaining in popularity and several Parkinson Canada local offices and support groups are coordinating such offerings with local dance education instructors and partners.

In Saskatchewan, the Parkinson Canada Regina support group now offers a Creative Dance Movement for Parkinson’s class with dance instructor Fran Gilboy, who completed initial specialty training with Sarah Robichaud of Dancing with Parkinson’s in Toronto this past May. The support group first approached Gilboy last spring to offer a 30-minute dance class and then had her return for another session.

“After the first class, I was inspired by this group. After the second class, I was on my phone in the parking lot, trying to find a way to get funding to offer classes in an ongoing way,” she says. The Regina support group applied for a grant from the Saskatchewan Arts Board and was awarded a $9,400 grant to offer a program about twice a month from September through to April 2018.

“My heart strings were really pulled by this group,” says Gilboy, who has long taught creative dance to both children and adults. “There is a whole different level of pleasure in teaching this Parkinson’s group. There is the simple essence of joy in dance and other things just fall away. It’s now my favourite class,” she says.

Another outcome of the Saskatchewan grant is the production of a short documentary video to use to fundraise for further grants and support and future marketing of the program. The video will be shown at a Parkinson Canada gathering of support group facilitators in Saskatchewan and accompany a lecture and demonstration at a Parkinson Canada education conference in Saskatoon in April.

No experience is necessary and participants are encouraged to do what is possible for them on any given day.  Offered this first year free of charge, the classes take place at the Sunrise branch of the Regina Public Library at 3130 Woodhams Drive. The class is open to people with Parkinson’s, care partners, family members and friends. For more information, contact Rosemary Oddie at 306-585-0087 or email parkinsonsregina@gmail.com or John Dawes at 306-584-3267 or email john.dawes@sasktel.net.

In the Greater Toronto Area, Dancing with Parkinson’s classes are offered in more than a dozen locations, including each Monday from noon to 1 p.m. in the conference centre at the Parkinson Canada Toronto office at 4211 Yonge St. north of York Mills.  Contact Naseem Jamal at 416-227-3377 or Naseem.jamal@parkinson.ca to register.

Across the country, check with your local Parkinson Canada office for similar offerings or visit your local area’s Parkinson Canada event calendar, accessed here.

Canada’s National Ballet School offers Sharing Dance for People with Parkinson’s classes on Tuesdays and Fridays. You can find information about their program and other organizations offering dancing classes for people with Parkinson’s at www.dancepdnetwork.ca.

You’ve been heard – thank you!

ApomorphineEarlier this summer, we put a call out to the Parkinson’s community across Canada to have your say about apomorphine (brand name Movapo®) and treatment options for people with Parkinson’s.

Thanks to your timely and meaningful input, we were able to prepare a patient evidence submission to CADTH, the Canadian Agency for Drugs and Technologies in Health.

We will keep you informed as any major milestones are reached. If you wish to follow the progress of this review now that together we completed the first important step, visit the CADTH website page that outlines the next steps in this review process: https://www.cadth.ca/apomorphine

The final recommendation is expected early in January 2018. If there is a positive recommendation, further processes will need to get underway before public coverage is made available. We will be sure to keep you informed.

We are grateful for your input and we are here if you have any follow-up questions. Contact Jacquie.Micallef@parkinson.ca.