I hid my PD for two years for fear of the stigma of the disease – as a Dietitian who loved my job I was afraid that my clients or my colleagues might think I was less capable. It was only when I decided to attend the World Parkinson Congress in Kyoto in 2019 that I was inspired by what I learnt but more importantly inspired by the people with PD who shared their experience, strength and hope regardless of where they were in their journey. It was that Congress where I decided to take control of my Parkinson’s instead of it taking control over me.
As a Dietitian, I always encouraged people with different chronic diseases to take control of their conditions, to track their symptoms and triggers when things are acting up such as someone with a gastrointestinal flare up in Irritable bowel syndrome, coeliac or inflammatory bowel disease or someone with Diabetes whose blood sugars are erratic. And I realized PD is no different, we have to look at our own body and mind patterns in relation to our symptoms and learn what helps to keep our symptoms smoother and less erratic or troubling.
My experience of listening to many people with PD over the last 6 years is that unfortunately due to very pressurized health systems, with severe shortages of neurologists (let alone Movement Disorder Specialists) and a lack of health professionals trained in PD it is particularly important for people with PD to become their own detective and their own advocate.
There is so much one can do oneself to take power over PD – learn whether your medication timing around your meals makes your symptoms better or worse, or whether moving your bowel regularly improves your symptoms, or noticing whether you get dizzy and light headed after eating a carbohydrate rich meal or that the week before menstruating your symptoms get much worse, noticing that adding exercise to your day improves your symptoms or that perhaps you lost weight unintentionally and your symptoms got worse, or you feel nausea after eating your meals.
All these are clues to what you could do to take control and improve your symptoms. It provides you with information that you can use yourself to change things but also to show your neurologist or health care professional so they can make the best shared care decision with you.
On the journey of developing the My Moves Matter app, I asked 12 different expert neurologists the same question – what do you notice about the people who tend to do well with PD – and the unanimous answer was those who tend to do well are those who take a proactive approach to managing their PD.
And that is why My Moves Matter was developed, as Digital Self-Care Companion to help you unlock the power of knowing what works for you so you can live your best life with Parkinson's.
We have just launched the My Moves Matter app on the Apple and Google play store where you can download it for free. There is a medication cabinet including PD meds and hormone medication for women, medication reminders, PD motor and non-motor symptom tracker, exercise tracker and for women a period tracker and the ability to track perimenopausal symptoms.
Knowledge is Power Over Parkinson's.