Living with Parkinson’s – My reality

I’ve lived with knowing that I have Parkinson’s since October 2013. I’m now 40 years old. And I am lucky that up until I noticed my Parkinson’s symptoms, in late 2012, I had only experienced one major health issue in my life. I was in pretty good health for most of my life.

It seems strange then, that I now can’t remember what my day to day life was like before Parkinson’s. I do know now, that I took my health and ability to do every day things for granted.

So, no analogies in this blog – this is my reality…

Here are just a few of the things I used to take for granted before, and how Parkinson’s has changed those aspects of my day to day life:

• Doing everyday tasks without a second thought – e.g. writing, typing, cutting up my dinner, chopping food, sewing, washing my hair, packing shopping, stuffing envelopes, getting cash or card out of my purse, washing and drying up – all of these tasks (and several others) are a struggle for me now – some more than others.
• Sleeping well – I used to sleep pretty much through the night most of the time. Now my sleep is disturbed. Whether I go to bed early or late, whether I’m not particularly tired or if I’m exhausted, I very often wake up after an hour’s sleep. Sometimes I go back to sleep easily, sometimes not. I often find myself awake in the middle of the night.
• Having more energy – I have so much less energy than I used to. So while I can still do most of the things I want to do, I need to plan rest day(s) before and after a holiday or weekend away. I often nap during a non-working day – especially if I am going out in the evening.
• The ability to remember things and to stay focused – I’m so easily distracted now and whereas I used to have a really sharp memory, I now have to set reminders for lots of things – including taking my meds every 3-4 hours.
• The ability to do things quickly – I am slower at everything now. And I find that particularly frustrating.

So that’s just a tiny insight into how my life before Parkinson’s compares to my life now.

Imagine for a few minutes, that the things you used to do automatically are a daily struggle.

Once in a while, I try to imagine what my life might be like now without Parkinson’s. But it’s just that … my imagination. Parkinson’s is my reality. And it’s a reality for many others too. 1 in 500 people have Parkinson’s. That’s about 127,000 people in the UK. I’m just one of them. I’ve tried to share with you a tiny insight into how it affects me, but Parkinson’s is a very individual condition, and symptoms and treatments are wide and varied.

Mostly, I just get on with my life as best I can. I try to be grateful for all the good things in my life, focus on my priorities, stay positive and share my experiences in case they might help others. And I feel I do have a good quality of life, even with the challenges I described above. But without my medication, it would be a completely different story.

That is why I need my medication – to give me quality of life. But Parkinson’s is a progressive condition and in 3.5 years since my diagnosis, I’ve already altered my medication several times to adapt to my symptoms changing. And the chances are they will need altering many more times in the future, as my condition progresses.

And that is why, those of us living with Parkinson’s rely on research to find better treatments, and hopefully one day, a cure.

Parkinson’s Awareness Week is on 10-16 April 2017 and the theme for this year is research.

World Parkinson’s Day is on Tuesday 11 April 2017. #uniteforparkinsons worldparkinsonsday.com

Parkinson’s UK – www.parkinsons.org.uk

Advertisement