Living with Parkinson’s every day I count as a blessing, and I always challenge myself to make the most of it. I am beginning to understand my personal limits, which are set extremely high, because I, me, never make things easy for myself! I am a doer who will never let Parkinson’s beat me.
Every day I go over the same old questions – never getting the answers
How long will I be able to work for?
Will I be lucky enough to share my forever life with someone until the end?
What daily chores or working activities that normal healthy people take for granted, that I am now finding difficult, will I not be able to carry out, who do I ask for help?
Do I need to set a 5 year plan?
There are no definites associated with Parkinson’s so how do I plan?
What was their name again?
What was I doing next?
Who was I meant to be calling back?
How can I help all people with Parkinson’s?
How can I make a difference?
What were we all doing that follows a pattern, resulting in our diagnosis of Parkinson’s?
Who can help us?
Who will listen to us today?
I will continue to build relationships with decision takers, policy makers, influential people, listeners, people who care and want to help us all in the Parkinson’s Community – to have a better quality of life.
I’m on a life long mission promoting
Better life skills and a positive mental attitude
What works for me – I will share with others – it may help some people
Promoting the ability to work out your own limits
When to ask for help
Being able to cope, and develop strategies to deal with your anxiety – my worst symptom of living with Parkinson’s
Parkinson’s is so so complex and one cure will NOT work for everyone – so why not share your experiences of living with Parkinson’s to help others on our journey together?
I am not a lover of reading constant negativity, promoting positivity is the way forward for me and being heard. I cannot do it alone though, but I will give everything I can to make things better for us all.
Welcome to the Parkinson’s UK forum.
Thanks for sharing your story with us, I’m sure most (if not everyone here) can relate to your questions. We have a really engaging community on the forum so I know you’ll hear from other members shortly. In the meantime, you can check out the Parkinson’s UK website for information regarding various different topics relating to the condition which you can find here - https://www.parkinsons.org.uk/.
Our helpline is a free confidential service providing support to anyone affected by Parkinson’s.
Our trained advisers, including specialist Parkinson’s nurses, can provide information and advice about all aspects of living with Parkinson’s. Do feel free to give us a call whenever you feel the need to on 0808 800 0303.
I hope to see you on the forum more often and if you have any questions, please do not hesitate to “@” me or privately message me.
Forum Community Manager
Thank you very much for your uplifting article. I see myself in your thoughts in many ways. I try to be positive too but all the questions you raised pass my thoughts every day.
I was diagnosed with PD 21 months ago but I must have been suffering at least two years prior to that. It was a shock but at the same time a relief to know what made me unwell and able to try and help myself.
From my own experience and attempt to live as normal a life as possible I would advise everyone to exercise as much as they can. For me this is the key. I go to the gym 4 to 5 times a week. I walk half an hour a day, I do my PD warrior exercises three times a week and I eat healthily. So far, I manage to carry on working full time as an accountant and I carry on with my life as before although with greater effort. It may sound strange to some, but I find my PD as a challenge and I get the satisfaction of achievement every time I carry on with doing the things I used to take for granted before the PD.
Hi Charlotte - yes, yes yes we need many more PwP like you to nail their colours to the mast. We need to remain mindful that each sufferer experiences a completely different cognitive and experiential interpretation of how we view the world we live in and how we deal with its challenges. We. cannot, therefore assume that our response to a multi-faceted illness like Parkinson’s will be the benchmark for comparing the malady of PD. I speak from a platform going back 26 years witnessing the devastating. almost warlike nature of PD that has decimated my life and left me wondering why some people experience a benign kind of PD existence while others including me watch as it takes more and and more - everything essential to sustain my life. I have learnt that power of this illness is found in it’s secrecy - that by sharing our experiences (which without a doubt are all different) we perhaps in some kind of sublime, yet overcoming way unwittingly expanding our experiential data base - next time a PD sufferer relates to you certain part of his/her illness - just listen without comparing.
all the best