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Parkinson’s – a positive outlook

Our guest blogger in March, Heidi Reynolds will not let her Parkinson’s diagnosis hold her back. She tells us her story.

heidiWhat did I know about Parkinson’s beforehand? I was very ignorant I’m afraid. When I found out I’d been referred to a neurologist with a specialism in Parkinson’s my initial reaction was to complain (loudly . . to myself I might add) that “what a waste of time this was as I wasn’t 85.” I bow my head in shame. It was me that was about to enrol into the school no one wants to go to with my new friend Mr P in tow. But the old adage is true…knowledge is power. 

Some of my lessons I have learned through the normal routes of study and reading. Others we have all learned the hard way. Through maybe not asking enough questions, whether that be about side effects or how to take medication or about deterioration in my condition. We assume that everything is Parkinson’s . . sometimes a path we are lead to, sometimes a path we put ourselves on. Either way it’s a dangerous one.

Check – everyday. And get those who love and know you to check- but check what? YOU.

Is your behaviour the same? Out of character? Are your symptoms the same? Are there changes? Write notes, keep a journal or note book. Don’t be afraid of asking for help. 

You need a team around you with Parkinson’s . . a good team. I don’t just mean the healthcare professionals. Clearly they’re pretty vital but you, your friends and family all form part of that team. You need people you can rely on. Rely on to be truthful, to tell you what you don’t want to hear, to make you laugh, to push you when you least want it and to keep that check too . . this is a big mountain we are climbing. Going up on your own, who can you share the views with? Parkinson’s is a roller-coaster for everyone…remember though, roller-coasters were built for fun too.

Life could become a very negative place if you let it. A world of noes. Don’t let it. Pace yourself, manage your time effectively and you’ll reserve energy. Learn to adapt. Adaption is key. Don’t look at a problem and think “I can’t do that” think “How do I do it differently” i.e. so that I can.

You may not do it in exactly the way you did before but what’s better? Getting out for a walk for 10 minutes, gardening just your rose border or saying you can no longer walk or garden? You CAN…yes, you have Parkinson’s but believe in yourself and you have the right to aspire to any challenge you set yourself.

If someone would have said this to me that fateful day I heard those words “you have Parkinson’s” quite frankly I’d have thought they needed treatment of a different kind.

However, hear me out. Parkinson’s, if you’ll let it, can and will bring you so many new opportunities. I was medically retired from my job. The process was started the day of my diagnosis in 2014, I was 37.

Last year I founded a support group on Facebook called Start Living Today PD (SLTPD). I wanted to create a positive place people could come who live with Parkinson’s (that means friends/family too) and motivate people to be socially and physically active and view things more positively.

On March 30, 2017, SLTPD celebrates its first anniversary. We have nearly 1000 members from 36 countries. I have built my own website, carry out media interviews and talks, design posters/leaflets etc…but what did I do before? I was a Sergeant in the Met Police. Very similar, LOL – so you see anything is possible.

The rain clouds will roll in, that’s inevitable but concentrate on the good to get you through the bad. You can’t have a rainbow without a little rain as the saying goes or to share my favourite quote:

“It’s not about waiting for the storm to pass, it’s about learning to dance in the rain!”

Visit Heidi’s blog at: startlivingtodaypd.co.uk

You can also find out about support in Cornwall from Parkinson’s UK:
parkinsons.org.uk/local-support-groups/regions/south-west-england/cornwall-young-onset-parkinsons-group