Things are not always as they seem

“I can wave!”

I can wave my hand! I remember feeling excited about being able to wave again, shortly after I was diagnosed with Parkinson’s and started taking medication. It may seem like a little thing, but for me it was a really big deal.

I had that excited feeling again, eight years later, last summer after my Deep Brain Stimulation (DBS) surgery. Even more than before, I kept waving excitedly and smiling several times a day, just because I could. Because just a few months before, if I was having a good day, I might have been able to wave gently just after my medication had kicked in, but that only lasted a short time. Within minutes, rather than hours, I would be struggling to raise my arm.

Several months later, I still get excited every time I beat an egg, for example (something else I struggled to do before DBS). When I think back to how my life was before my DBS, it seems like a miracle! I’m so grateful for the opportunity to have DBS and for the NHS and all of the NHS team who carried out my surgery. And yet, I know it’s a not miracle or a cure. I still have Parkinson’s which is still degenerative and getting worse with time, even though I feel so much better because my symptoms are so well controlled compared to before. It’s hard to get my head round it, but for now, I am just grateful for my improved quality of life.

Talking of things that are hard to get my head around, being diagnosed with Parkinson’s when I was 36 years old is another one.

Before my diagnosis, Parkinson’s seemed like an ‘old person’s disease’ which made people shake. When I think back, I can’t believe how ignorant I was then. Things definitely aren’t always as they seem.

There are over 40 symptoms of Parkinson’s and every person with Parkinson’s will experience different symptoms. Some people don’t even have a tremor. When I see my Parkinson’s nurse (who by the way, is brilliant – I’m so grateful), she asks about my bowel movements. I’ve never had any issues there (something else to be grateful for), so it always seemed like an odd question to me, until I met other people with Parkinson’s and discovered that constipation is fairly common for people with Parkinson’s.

Unite For Parkinson’s

Parkinson’s affects all of us with the condition in different ways. It also affects our families and friends and those around us. However, there is one thing which I am sure is the same for each and every one of us, no matter how it affects us as individuals. We all hope for a cure for Parkinson’s. Thanks to all the hard work and research into Parkinson’s worldwide, I believe that one day, that cure will be found. #UniteForParkinsons

A Poem for World Parkinson’s Day 2022


Where do I begin, what can I say!

It affects us each in a different way

One thing unites us, of this I’m sure

We’re all hoping, one day for a cure

Unite for Parkinson’s today!

You can read more poems written by people with Parkinson’s on the Parkinson’s UK website: Poems for Parkinson’s

Thank you

There’s so much going on in the world right now, so I would like to say a big thank you for taking the time to read my blog. World Parkinson’s Day may seem like just another awareness day – but for those of us with Parkinson’s, every day is a day with Parkinson’s until that cure is found. #WorldParkinsonsDay #LetsTalkAboutParkinsons

If you would like to support people with Parkinson’s, please consider supporting any of the following UK charities*:

*or one of the many registered Parkinson’s charities worldwide.


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