World Parkinson Congress 2019 Bloggers: Natasha McCarthy
Author: Natasha McCarthyPublished: 17 January 2018
Prep: Cook: Serves:
In the first in our series profiling the bloggers supporting the World Parkinson Congress 2019, we talk to Natasha McCarthy, who writes A Broken Body’s Journey, about navigating life with young-onset Parkinson’s disease, while raising a young family on a small island in Canada
Do you have a particular audience in mind when you’re writing?
When I started writing, it was just for myself – I couldn’t hold a pen to write any more so it was like a journal to get things off my chest. Soon it dawned on me that I couldn’t be alone and that there must be other people like myself who are young and have Parkinson’s, who are parents of young children trying to manage life this way. So, I decided to share it with that group in mind.
Is there an aspect of Parkinson’s that you’re most passionate about?
Exercise for sure. I work out between four and six times a week and I’m always reminding others with Parkinson’s that exercise is the only proven way to slow the progression of the condition; that we have two choices to sit back and feel sorry for ourselves and get worse fast, or get up and fight. To me that’s not a choice. Move it or lose it. Plus, my children need to see that their mum is not giving up.
How widely read is your blog and in which countries?
My blog averages 8,000 to 10,000 readers per month from all over the world, which is still surreal and mind-blowing to me. My primary audience tends to be in the US, Canada, Russia, France and the UK.
Have you been surprised by the global audience you’ve attracted/the level of interest you’ve attracted?
Shocked to say the least. I was featured on the Michael J Fox Foundation’s social media soon after being diagnosed and that seemed to have send my audience into a frenzy. I’m now reaching 155,000 views and it still surprises me that all this is from a blog originating from tiny little Prince Edward Island, Canada.
Which of your posts has attracted the most interest from your readers?
My posts about parenting with Parkinson’s are always extremely popular. Next are the posts that talk about the emotions that come with living with this condition.
Talk us through your routine: when do you find time to blog?
My life is very busy, not to mention I don’t sleep much – just three to four hours a night average, thanks to Parkinson’s-related insomnia. I have two young children – Samantha, nine, and Izabella, six – and my husband works on the opposite side of Canada in British Columbia. So, life can be challenging being home alone sometimes which is another reason it’s important I exercise to stay well. I don’t tend to blog for the sake of it. I do it when I feel compelled to, or when a situation arises that I struggled with that I think others are likely to be facing too. Most of my posts are written in the wee hours of the morning while everyone else in the house is asleep – usually four or five o’clock in the morning.
As for a routine, I typically wake very early. I’ve turned the garage in our home into a music therapy room I call “Corner Jam”, where I come and get lost in music. I’ve taught myself how to play a variety of instruments over the last year, and I pray I’ll be able to continue to play them for years to come. Although dystonia in my forearm can make playing certain ones challenging. When the kids get up I get them off to school and I usually continue with music therapy for a while before I hit my home gym for a workout.
Natasha McCarthy plays in her music room early each morning
Natasha’s weekly schedule
Personal training sessions at home – 3 x per week
Horseback riding (working balance, leg strength and posture) – 1 x per week
Gym session – 1 x per week
Parkinson’s boxing class/dance movement class – 1 x per week
Music therapy class – 1 x per week
What physical challenges do you face in writing and do you use any technology to support you?
I can’t hold a pen to write, so I type. I’m not able to use a mouse as I have dystonia in my hands (and also in my forearms and calves) so I’ve had to purchase a touch screen laptop. On days when my hands may be worse than usual, I sometimes use voice technology to type for me.
What do you hope people will take away from reading your blog?
I hope that when someone reads the blog they know that they are not alone. That the challenges we face living with Parkinson’s are real, but that despite them if we remain positive and focus on doing the things we should do to slow progression and make life easier we can still live a good life. I also have a big focus on educating people about the disease.
I try to be candid about things that bother me and I know bother others with Parkinson’s. Like my Top Ten Parkie Pet Peeves post, in which I urged people to ask questions of us, not assume; to ask us how we are but not to say “but you look good” or “you don’t look sick”. Because just because we live with Parkinson’s, it doesn’t mean we can’t dress well, take care of ourselves and look good. And not to assume we don’t have challenges just because they only see us “on” meds. I often post videos showing my “off” periods, so people can see how drastically things can change if medications aren’t working well.
Natasha uses horseback riding to improve her balance, leg strength and posture
I also post videos of exercises and motivational speeches on my YouTube channel in the hope that they help someone else with Parkinson’s get moving again. Most of all I hope that people read it and find some hope. That they see that we should never say “I can’t” but instead replace that with “I’ll try” – and sometimes “try, and try, and try again”.
How did you get involved with the WPC?
It’s an amazing organisation and has such valuable information and feedback. I came across it through social media and I knew in a very short time this was a unique, one of a kind organisation. I had known some people in my area with Parkinson’s who had been to the WPC in Montreal some years ago. A friend and fellow Parkie who I met through my blog actually put me in touch with the WPC telling me that I should become one of their blogging partners. It was an honour to be selected to do so – now for the second time around.
Can you share any memorable moments from the last one you attended?
Meeting the former NBA player Brian Grant was pretty amazing, he was so kind and gracious, taking the time to talk to people and have photos taken despite his busy schedule. I had the honour to interview him for a blog post which I chose to do on parenting with Parkinson’s since he’s a fellow young-onset and parent. I felt it was a spin on his story that isn’t typically focused on, and it’s actually the most popular post of all time on my blog. Hearing him speak and offer truth about his struggles and inspiration was amazing.
But aside from that and the amazing speakers I had the pleasure of meeting like Tom Isaacs and May May Ali, spending time with some of the people from all around the world living with Parkinson’s, with whom I had become online friends, was such a wonderful experience. The information and the knowledge given out at sessions at the WPC is invaluable, but networking with fellow Parkies is pretty spectacular too.
Being recognised was surreal. I even had one reader ask to have her picture taken with me. I remember saying to her: “Really? You want a picture with me?” to which her husband said: “Yes, she’s been on the lookout for you since she arrived!” Although a bit strange it was a beautiful moment that I cherish. To know that telling my story had that much of an impact on this young woman living with Parkinson’s inspired me to keep writing and keep being honest even about the tough stuff.
What are you most looking forward to at WPC2019?
Everything! Now that I’ve gone once I know how to pace myself and plan better in advance in terms of what I want to see and hear at the conference. I urge people to take the time to review the content that will happen when they are there. There are a lot of sessions and a lot of information and it can be overwhelming. I also hope to bring a support person with me next time so they can attend different sessions.
I can’t wait to hear from the specialists and researchers on what new treatments are in the pipeline. I can’t wait to be inspired yet again by an event that brings together patients, doctors, researchers and care givers all at one conference. Most of all I can’t wait to see the friends I’ve made in the Parkinson’s community again; to meet the new friends I’ve made thanks to the world of technology and speak to these individuals that inspire me daily. It’s going to be awesome just like Portland was, and it’s truly an honour to be a small part of this amazing worldwide organisation.
Need to know
Name: Natasha McCarthy
Blog: A Broken Body’s Journey
Describe yourself in a sentence: “I’m stubborn and therefore refuse to let Parkinson’s ‘win’– so I fight day in and day out to ensure I do my part to live well despite having this disease.”
WPC2016 Bloggers: (L–R) Laura Kennedy Gould, Natasha McCarthy, Marcus Cranston, Bruce Ballard
Sir Billy Connolly: stop calling Parkinson’s ‘incurable’
The Scottish comedian calls for more positive Parkinson's language
7 days ago
New insights on immune cell process and Parkinson’s disease
Insoluble clumps of the protein alpha-synuclein, which can cause damage to brain cells, have been previously linked to Parkinson’s. Now, scientists in Germany, France and the US have uncovered new details on how brain cells respond to these clusters. The researchers discovered that the brain’s immune cells may be able to join together to break down the protein clumps. According to a press release, this was previously unknown. They also found that these neighbouring cells share mitochondria – structures that generate energy for chemical reactions – to help one another. In certain mutations associated with Parkinson’s, this process may be impaired. The researchers hope this insight could inform the development of new therapies. “We have opened the door to a field that will certainly engage researchers for many years to come,” said Professor Dr Michael Heneka, director of the Department of Neurodegenerative Diseases and Geriatric Psychiatry at the University Hospital…
Could analysing skin oil help diagnose Parkinson’s disease?
Parkinson’s disease patients tend to have high levels of oil, known as sebum, on their skin’s surface. Now, a study has suggested that analysing this substance may help when diagnosing the condition. The study revealed that sebum contains significant amounts of genetic material, specifically the molecule ribonucleic acid (RNA). Analysis of RNA contained in sebum – that is, skin surface lipids RNA, or SSL-RNA – could offer insights into a person’s health. Researchers in Japan examined SSL-RNA in men and women with and without Parkinson’s. The results suggested that the SSL-RNA profiles of those with Parkinson’s had “different characteristics” than those without. The researchers then tested whether examining these profiles with machine learning could reveal those who had Parkinson’s – and who didn’t. The team’s algorithm indicated a “relatively robust discriminatory ability,” supporting the further use of SSL-RNA as part of a future “non-invasive” method for diagnosis.
‘Sonic hedgehog’ protein could impact Parkinson’s disease dyskinesia
Dyskinesia is often caused by extended use of the common Parkinson’s medication levodopa – and can be debilitating for those with the condition. Now, researchers in the US may have found a way to suppress these involuntary movements through a protein called ‘sonic hedgehog’. To conduct their study, the team administered levodopa and sonic hedgehog agonists to rodent and non-human primate models of the condition. The results revealed that dopamine neurons use the protein to communicate with other neurons thought to play a role in levodopa-induced dyskinesia. Increased signalling of sonic hedgehog pathways was found to reduce this dyskinesia – providing “novel insight” into its formation and a “potential therapeutic solution”. “What we find,” wrote corresponding study author Professor Andreas Kottmann, “is that in several animal models, by replacing … dopamine together with agonists that mimic the effects of sonic hedgehog, these dyskinesias can be very much suppressed.”