Parkinson’s is all about balance

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“Mummy, is Parkinson’s contagious?” In her own way my daughter, Frida, had been interested in Parkinson’s research since she was about five or six years old. And rightly so, as she was only four months old when I was diagnosed. “You have Parkinson’s,” the neurologist said, “Have a nice day.” The neurologist’s words literally made me feel like I had fallen into a black hole . . . I thought that I would never smile again.

In fairness, my diagnosis of a neurological disease on that day not long after my 32nd birthday, was not like a bolt out of the blue. I had known that there was something wrong with the way my body had been responding since my teens. Nevertheless, hearing from an expert, a neurologist, that I, the mother of a beautiful baby girl, had an “old person’s disease” did come as a shock to me.

My darling Frida is now a very clever and funny 12-year old with a beautiful singing voice who makes me smile a lot, every day. And I have long since climbed out of that black hole. Frida has always known that I don’t move as well as other parents, and that I sometimes get tired and need to rest. We talk very openly about Parkinson’s in our family, and I think that she feels comfortable enough to ask me anything Parkinson-related.

Five years ago, having spent a considerable amount of my time after my work as an engineer on learning about Parkinson’s, I decided to try making my disease my day job. I wanted to combine my patient experiences with my engineering skills; my dream was to work together with researchers to try to improve the quality of life for people with Parkinson’s. Encouraged by my husband, I applied to enter a masters program in health informatics at Karolinska Institutet in Stockholm, where I am now a doctoral student with my field of research as self-care in Parkinson’s. I am looking at how we can use our own observations to learn about and improve our condition, sometimes aided by different kinds of technology like apps, sensors or other devices.

My most difficult Parkinson’s symptom is freezing-of-gait, and I am exploring this problem from a lot of angles. I find that physical activity and customised exercises helps, and I also read a lot of scientific articles to learn as much as I can. Both Frida and my husband are very engaged and often help my try out new options that might help. It is very true that Parkinson’s not only affects the person with the disease, but the whole family, and probably more so when the children are not yet grown up.

When walking around town, Frida is like a watchdog, constantly looking out for potentially difficult situations where I might freeze. She is really good at it and very often warns me even before anything happens. She is very quick at helping me when needed, and I really appreciate that. But of course, I would prefer it if she didn’t’ have to help me, which is my biggest motivator – I do everything I can to stay well for Frida’s sake – I want her to not have to help me when we are out walking!

I would love for my daughter to NOT know as much about Parkinson’s as she does; but since I cannot take away Parkinson’s from our family, I think it is very important to be open about what Parkinson’s is and how she can help me if so desired. Just the other day, Frida told me that she doesn’t think my Parkinson’s is a big problem to her, and I take that as a confirmation that I am doing something right and haven’t put too much Parkinson’s in her life even though I made my disease my career. I seem to have found the right balance between life with Parkinson’s in the family and researching Parkinson’s at work, which is very good. Because Parkinson’s is all about balance. Literally.

Follow Sara Riggare on her blog Not patient but im-patient

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