Young-onset person with Parkinson’s Christine shares her experiences of parenting, blogging and exercising with Parkinson’s, and finding inspiration in World Parkinson’s Day
Christine Jeyachandran, 42, was diagnosed with young-onset Parkinson’s in January 2014, at the age of 37. Originally from Australia, she now lives in Arequipa, Peru, with her husband David and their children: 11-year-old twins Amelia and Annabelle, and Samuel, 8. Here, the new blogger and gymnastics enthusiast tells the EPDA about life as a young person with Parkinson’s (PwP), and about the challenges of parenting with the condition.
Christine with David, Amelia, Annabelle and Samuel
How did your Parkinson's diagnosis come about?
“I had noticed a weakness in my left arm and fingers – for example, if I lifted a jug with my left hand, water would spill. When I dropped a set of mugs, we decided to consult our GP (family doctor), who organised blood tests and an MRI. We were in Lima at that time, and our GP suggested we visit a neurologist there. It didn’t take too long for the doctor to make the diagnosis, and it made complete sense, but we left the hospital shellshocked.”
What challenges do you feel younger people with Parkinson’s face?
“I think younger PwPs hide the condition to avoid discrimination, especially in work settings. The other problem can be finding time to exercise if they’re not retired like some older PwPs.
“Here in Peru it is quite depressing, as the people I know with Parkinson’s hide it from their employers, friends and even their kids. They see it as a curse and people often treat them differently if they know.”
What’s it like to be a parent of young children with Parkinson’s?
“When we found out, the children were young and we didn’t tell them, but little by little they became more aware. When we visited churches in Australia, I told the story about my diagnosis. My twins took it all in and understood more and were able to ask questions about it. Samuel is not asking but he knows the basics. They are my little Parkinson’s advocates and they keep me motivated.
“One of my kids is particularly sensitive to it and tells me constantly to carry out various physiotherapy-type activities. My kids train gymnastics and I love watching them - so finally I decided I wanted to do it too. I signed up for an adult class (dance mainly) with my girls’ coach - with much fear but totally inspired by my little gymnasts.”
What advice would you have for a parent with young children who has been recently diagnosed?
“My advice is that the children are on your team. Include them on your cheer squad, but of course share only information that is suited to their age level. Your Parkinson’s is their ‘normal’, so don’t make a big deal about it. I have one friend who is hiding it from her kids and I think this causes her extra stress.”
How did your blog come about?
“I started the blog in June 2018, after I made a video for World Parkinson’s Day. I was shocked by the positive response to my video, which included more than 900 views on YouTube and 1,500 on Facebook. I’ve received lots of encouraging comments from friends, acquaintances and strangers. The whole experience has encouraged me to fight against the disease and encourage others in the process. I have been inspired to start a new fitness regime and decided to encourage others by writing the blog in English and Spanish.
“I have always loved writing but I need good editors, as my written Spanish is not perfect. I really wanted to make it bilingual because I have friends from both language communities and because I think it can encourage Spanish speakers too. Translating is the hardest part of my blog but I rely on others to check it. My husband is a programmer and helped me set up the blog, but I am learning a lot too.”
The whole experience has encouraged me to fight against the disease and encourage others in the process. I have been inspired to start a new fitness regime and decided to encourage others by writing the blog in English and Spanish.
What do you hope your blog will achieve?
“I want the blog to educate and encourage others, and I think it is already doing that. My goal is to go to the World Parkinson Congress (WPC 2019) next June, so I thought blogging was the best way to keep myself in the Parkinson’s world and keep myself on track with my own exercise program. I am not sure if I can go but I am enjoying blogging. I’d like also to make a video for the WPC 2019 Video Competition so I am working on this.”
In what ways does writing help you?
“People don’t always know what questions to ask about Parkinson’s, so writing helps me express truths about the condition and my experience of Parkinson’s. It is hard to go deeper in conversations but this is a comfortable way to do it and the responses have been kind. People have been encouraged in their own life problems as I am a normal person trudging along too (literally).
“I have forwarded my blog to Parkinson’s networks here in Peru; these folks feel very alone and physically isolated so it has encouraged a few people. But it is just the beginning.”
It is hard to go deeper in conversations but this is a comfortable way to do it and the responses have been kind
What advice would you offer to anyone with Parkinson’s who is considering a new challenge?
“I went trekking for four days at altitude last year with my family. Recently I travelled to Iguazu and exhausted myself walking around that amazing place. I took up gymnastics when people say that adults can't do that sort of thing.
“So, my advice would be to consider what do you dream of doing, and what is stopping you? Fear, clumsiness, embarrassment? I felt the same way, but I wish I’d done these things years ago. There are no Parkinson’s classes where I live but I resolve not to let that stop me. For me the key was building in accountability , which means being in a classroom setting with a teacher who encourages me. What is the key for you?
“Every day is a challenge! I get very tired and my muscles ache from yesterday’s workout but I am getting stronger daily and I am looking for my next challenge.”
Christine hiking in Huaraz
- Christine's blog
- Hand Standing For Parkinson's Disease - Video for the WPC 2019 Video Competition
- World Parkinson Congress 2019 Video Competition
Have you found writing or other means of being creative helpful in dealing with your experience of Parkinson’s? Do you find reading Parkinson’s blogs useful? Email firstname.lastname@example.org and tell us your stories.
The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.