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:
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.
Eamonn, a focus group attendee who lives with motor neurone disease, wanted to share his story but was on holiday when the event happened! In this blog, you can view a short video by Eamonn describing his experiences.
A big thank you to Eamonn for creating this film for us to share, and for helping us make a difference to people being diagnosed with neurological conditions in the future in Essex.
Please note – all of the opinions expressed in this film are Eamonn’s personal views.
We recently ran the 555 Neurology Project with Healthwatch Essex and the Essex Neurology Network. The people who attended our focus groups described their diagnosis conversation to us, with a range of themes emerging.
Some had been guided through the diagnosis conversation expertly by neurology professionals, and some felt steps had been missed out and the journey could be improved.
I wanted to share this quick snapshot of the 5 themes:
While there are five key themes, participants felt strongly that these are not mutually exclusive, and that each needs to be acknowledged at the same time – during that diagnosis conversation.
If you would like any support with diagnosis, or just have some questions, do contact the MS-UK Helpline via our live web chat service or by calling 0800 783 0518. You can also order a copy of our newly diagnosed booklet by visiting www.ms-uk.org/newdxpack.
Thank you again to everyone who took part in the 555 Neurology Project, we couldn’t have done it without you!
Marketing Manager, MS-UK
On Wednesday 08 June, Healthwatch Essex hosted the launch event for the 555 Neurology Project report, in partnership with eight charities from across the county, including MS-UK!
Senior staff from Essex Clinical Commissioning Groups, local neurologists and health professionals came together at the Chelmsford City Racecourse to hear the lived experience of five people who have been diagnosed with a neurological condition in the past three years.
The event launched the findings of the recent research project, which was led by MS-UK and undertaken in partnership with member charities of the Essex Neurology Network.
A series of focus groups took place across the county to capture the lived experience of people who have been diagnosed with a neurological condition within the past three years. They were encouraged to talk about what being diagnosed was like and what would have improved their experience.
Neurological conditions include brain injury, epilepsy, Huntington’s Disease, Motor Neurone Disease, multiple sclerosis, Parkinson’s, Progressive Supranuclear Palsy and stroke, and affect over 35,000 people in Essex.
Patients from the focus groups shared their experiences face-to-face with the neurological professionals who deliver care in Essex. By listening to today’s service users, these professionals have taken the first step to help improve that diagnosis experience for future generations.
Thank you to every single person who took part in this project, we have enjoyed conducting the research and sharing the real voices of people in Essex.
I do hope you enjoy the report!
Marketing Manager, MS-UK