Last year we took part in the 555 Neurology Project with Healthwatch Essex. We asked people from across Essex about their experiences of being diagnosed with a neurological condition, and one such person was Angela.
In this blog, Angela writes about her experiences of living with Parkinson’s. Now, I realise this is not about multiple sclerosis, but I hope you’ll agree that some of the things Angela says here may apply to any long term condition.
What I would really love to do is share some stories of people living with multiple sclerosis…
If you would like to write a guest blog for us about your own experiences, please email John and he will send you our blog guidelines.
Thanks, and I hope you enjoy this blog,
Living with Parkinson’s – I have a choice
I was diagnosed with Parkinson’s 3 years ago when I was 36. Being told I had a degenerative neurological condition and learning to accept that fact, was most definitely one of the biggest challenges I have faced in my life so far.
So much to take in, so many questions – the enormity of such a diagnosis was overwhelming. Added to that, stress undoubtedly aggravates symptoms, but how can you deal with news like that and not feel stressed?
Parkinson’s, like MS, affects different people in different ways. It’s a very individual condition – symptoms can vary immensely from person to person and so can the treatments that we use to help control our symptoms.
It’s little wonder then, that accepting my condition and finding the best way to live with it, took some time.
The turning point for me – when I finally began to really accept my diagnosis – came when I truly understood that I have a choice. I didn’t choose to have Parkinson’s, but I can choose how I live with it. So, I made two important choices:
- I am going to do everything I can to look after myself – physically and mentally. I don’t need any other health issues, on top of Parkinson’s
- I am going to work on becoming more resilient, so that I will be able to cope with whatever challenges life may throw at me in the future – health or otherwise
These became my priorities. So every other little choice I make on a daily basis, needs to be made with these in mind.
The fact that I have a choice turned everything on its head. Because even when faced with things I have no control over – I can control my reaction to them. It’s all about attitude.
That said, like everyone, I have good days and bad.
Living with a long term condition brings different challenges each day. However, I appreciate the good days more, and I am learning to cope better with the bad days.
Three years on from that day when I was diagnosed with Parkinson’s, I am still learning new lessons all the time, but I am in a much better place. I don’t get as stressed about things as I used to. I can now talk about the fact I have Parkinson’s and how it affects me without getting tearful. I am more grateful than ever for all the good things in my life.
Despite being a fairly reserved and private person, I now help to run a Facebook support group for people with Parkinson’s (Start Living Today PD). I’ve also started writing my own blog about my experiences of living with Parkinson’s. I’m keen to raise awareness about Parkinson’s. It doesn’t just affect older people – 1 in 20 people diagnosed with Parkinson’s is diagnosed under 40.
I’ve learned so much from my Parkinson’s journey so far – and I continue to learn all the time. I hope that by sharing my experiences, I may – in some small way -be able to help other people.