My recent experience

Hello all

I don’t know if this will be of interest to anyone let alone be helpful and of course, as always, you are at liberty to disagree, but thought I would share it with you and just see what happens. I would stress this is purely my own view, my way of living with Parkinson’s. It won’t be everyone’s way but it works for me and having been tested more than I could have imagined this past year or so, I believe it more than ever.

If any of you have ever caught up with some of my forum posts it won’t take you long to realise that for me one of the strongest tools I have at my disposal is to do my best to stay positive. Copied below is a post I wrote in June at the end of several posts on living alone with PD and will set the scene for what has happened during the last 13 months up to June.

Actually Jackson things are more ok than they have been in a year. The last six months of 2019 saw me with two separate 2 week hospital admissions, one three week period of rehab, one emergency surgery and the time in between just getting my energy back. Felt good going into the new year, then one week in my flat was flooded by my neighbour’s washing machine, I had to move out first to a hotel for several days then a rented flat on a 6 month lease. Had been here a month when the lockdown started and all works stopped except the driers drying out my flat which took 3 weeks. A couple of weeks ago work restarted and just heard yesterday that work will be completed by end of 2nd week in July and will be moving back to my own flat towards the end of the month. Never known a period like it but survived still standing and hoping the rest of 2020 has no more dramas in store. So I can honestly say at the moment life is good, I am well and have survived all that’s been thrown at me more or less in one piece. See what I mean Jackson no point worrying about the future you never know where it might take you!!

Had I but known what was in store you might argue I was tempting fate. I moved back to my flat as planned at the end of July not to the minor snagging and cleaning that might have been expected but to something of a disaster zone. It was as if the contractors had suddenly gone mad - the pump had not been fitted on my shower, the wc was left in a disgusting state with broken flush, my three storage heaters were badly scratched not hung straight and one had both control knobs missing. There were a number of smaller issues too. If that wasn’t enough my phone and Internet service meant to go live the following day didnt - the phone, line was later found to be broken. As I write I still have no landline or Internet, I am awaiting installation of new storage heaters and a few other unresolved matters. All works should be completed by mid September.

I don’t write any of this in order to elicit sympathy, pity etc rather it is to say that I have quite amazed myself at my ability to be finally nearing the end and still be in one piece. It has not been an easy. There have been times when I’ve truly wondered how much more I could take and I will be forever grateful, to family and friends for keeping me going albeit at a distance. The down times never lasted long and the only logical explanation for that as far as I am concerned is this streak of positivity that I seem to be able to maintain come what may.

Although it has in many ways been a nightmare, it has shown me that I am stronger, more resourceful and can cope with more than I realised. I don’t know if my ability to be positive is innate, learned, second nature because of my varied working experiences or luck. It doesn’t really, matter I am just glad I have it. If it can keep me going as it mostly has through all this, it gives me renewed strength to face an uncertain future.

Maybe it is worth exploring what keeps you going, it may throw up some surprises or perhaps some ideas on how you could do things differently by changing your perception of where 'you’re at. ’ Don’t you owe it to yourself to seek out a real chance of living with Parkinson’s and not just existing or wishing it was otherwise as so many seem to do. I wish you luck with whatever road suits you. For me, I think I will stick with trying to remain positive and hope md resolve won’t be tested quite so hard for some time - maybe I should consider hibernating for the winter!


Hi Tot,

Thank you for posting the update, I’ve been wondering how you were getting on and had my fingers crossed that you were back in your flat and everything was sorted so I’m really sorry to hear that you’ve had more challenges to cope with.

I love reading your posts and I admire your outlook. In spite of my fluctuating ability to apply it, I take your advice on board because I think it’s very sound and I agree with much of what you say. Of course I am a polar opposite in some ways: I try very hard to make peace with Parkinson’s because I have to live with it whatever I feel about it occupying my life, I don’t like the concept of fighting it because there’s no point doing battle with something that you’re going to have to co-habit with for life, but you won’t be surprised to know that I struggle. I have a natural tendency to overthink and question everything and even when I manage to get to some sort of acceptance in terms of my feeling towards having Parkinson’s, I just seem to refocus my attention towards the increasingly shoddy treatment we are given by the NHS and the lack of understanding of Parkinson’s in society in general. :-S

Ho hum, positivity for me is a work in progress.

I hope you don’t decide to hibernate and have everything crossed that your flat really is ready by the end of September. I honestly don’t know how you’ve managed to get through the last year and am totally amazed at your resilience.

I have taken a lot of inspiration from your posts. Along with living in the ‘now’, making the best of what I have and appreciating what I have, I’m also working on being kinder to myself instead of constantly lamenting my failures so I’m going to continue to work on finding some sort of peace with PD, continue to work on living the best life I can in the here and now while simultaneously continuing to question policy, practice and provision in terms of support for people living with Parkinson’s Disease and the general treatment of People with Parkinson’s by society.

It’s a bit of a tight rope to walk but you roll with what you’ve got.
Good luck with the flat and please keep posting.

Hi Tot.

2020 has not been a good year for anyone. But you have certainly had some very bad luck, and most of it inflicted by other people.

A lot of people would have crumpled under the strain. But being positive is the only way to get through life’s little obstacles.

Helping yourself, is often the only way to go, and proves you can do it.

I wish you all the best for the future, and and may it get much better for you.

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Thank you Johnny. I am certainly hoping for a quieter time when everything is finally done next week that’s for sure!

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Wow tot well done on getting through so much ‘stuff’ and still be able to remain positive. I’m always extremely interested in the question you raise - are you innately born with the ability to be positive, is it something you’ve learnt and are able to maintain with practice? I reckon the answers to these might make you very wealthy :wink:. Personally I feel the skill in being able to remain positive during adversity is part genetic versus part practice and is very much something to aspire to. keep it up, without doubt it seems to help in so many ways. Really hope your home gets sorted properly. Best Wishes

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Thank you for your comments work should all be finished next week and I think this time that might actually happen. With regard to being positive I personally think it is a mixture of the type of personality you happen to be ie glass half full or empty and the opportunities life gives you and how you choose to view it - opportunities can be both good and bad. Or perhaps its no more complicated than i am stubborn and choose to always at least try and see the silver lining. I worked for many years in the 'care and disability ’ sectors and I don’t think I would have been very effective had I had a negative view of disability. Without doubt two things in particular shaped my view. First many years ago i had a placement in a day centre where I met a lady with advanced dementia. She was both physically and verbally aggressive a great deal of the time and very difficult to have any real meaningful relationship with. This lady once held a very responsible job as senior buyer for a large department store. I have never forgotten her nor that everyone has a history that may not be apparent if you meet them professionally. I always tried to remember that in my work and do my best to make professionals I now have in my life aware that I am Tot first who happens to have Parkinson’s. Staying positive helps to do that. Second for six months i worked in palliative care which i can only describe as a huge privilege. Talking with people who know they are dying puts a whole different perspective on life. Put together with my own life choices and experiences has made me who I am - positive streak and all!


To all who have commented so positively to my posts relating to my rather dramatic year, my thanks and thought you would like to know that my flat and phone/internet have all works completed and I seem to have survived and feeling ok if a bit tired!

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Amazing @Tot, I’m glad things have worked out. Please take it easy and take as much as you need. :slightly_smiling_face:

Best wishes,