Heidi is a passionate and talkative community leader! She usually gets out of bed to ride her spin bike as preparation for paddle boarding season. Founder of the Start Living Today PD Facebook group, she shares huge zest for life with her fellows no matter how Parkinson’s disease can affect her. Dive into a conversation with Heidi below.


Please tell us your story about Parkinson’s and the diagnosis…

In 2008 I changed my life, got fit & lost weight but my increasing shoulder pain was unhelpful. On July 28, 2014 3 shoulder operations, countless other procedures, problems balancing, unremitting shoulder pain, short-term memory issues, a tremor & more I was looking at a serious faced neurologist: “You have Parkinson’s”. Degenerative, No Cure. That’s all I heard. A fun afternoon. I was 37. [Please read more on Heidi’s blog].

How do you think smartphones can help early detection of Parkinson’s?

Mobiles are a fantastic tool, it’s like a mini computer in your hand at all times! The ability to monitor motor skills for example: With use of games and tests, tremor, through Apps allowing both those diagnosed or friends and family to monitor, keep a track of medication and set alarms, likewise with medical appointments, the ability to pair mobiles so if for example a medication alarm hasn’t been adhered to the friend or family member could call. Medical professionals too could benefit from the diaries kept and tools & apps if/when and currently available to help give a more holistic view of their patients. There are countless ways in which a mobile could prove useful and already do!

How can people living with Parkinson’s sustain their quality of life?

I’m a firm believer in a positive approach to life. In turn this leads to help motivate you which helps you feel happier, or turn each around, motivated you feel more positive and happy, so my 3 words became the basis of what is now a Worldwide Community Network called “Start Living Today PD”. We are across social media with a following of approximately 5.5k and very soon launch our brand new website.

My passion to show you can LIVE well with Parkinson’s implies to work together with your healthcare team, work hard and -as my consultant told me on diagnosis although it is a degenerative condition- take control of it before it begins to eventually take control of you. When the latter is: no one knows! So I turn to my love of exercise.

With the support of my Physio I workout doing a combination of Les Mills based classes spin, hit, weights, cardio, yoga… even a ballet fusion class! I walk the stunning coast path on the Lizard Peninsula in Cornwall where I live, I obviously also have my paddle board for 7/8 months of the year and for the big kid in me body boarding (blame my ever fun loving incredibly supportive rock of a husband – so we’ll let him off) it puts such a huge smile on my face too, as I squeal my way towards the beach. The funniest part is when hubby suggested it my response was ‘why would I want to do that’.

So to sustain quality of life of course we need our physicians and medical support team behind us but in short we need to work hard too; it’s vital to get out, remain connected and have fun. Always remember Parkinson’s is just a condition, not who you are. The person staring sadly that IS who they are. So who has the issue? Get out there and live!

Discover Heidi’s most recent YouTube release: https://youtu.be/of6LSegMkj8
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