Discover more from Who Stole My Dopamine?
Save the clock tower...
Where Emma ponders the future.
Thank you for the response to the new series of your Parkinson’s stories. I am still working on the directory, figuring out how to host it and all the technical stuff. I’ll keep you posted!
“When did the future switch from being a promise to being a threat?”
― Chuck Palahniuk
After the what-the-actual and what/how/why post diagnosis the next thing to panic the living daylights out of me was…what about the future?!
As with everything connected to Parkinson’s it is utterly unpredictable.
I know one person who has had Parkinson’s for years and years and their symptoms are pretty steady (haha, but you know) Other folks have been diagnosed for only a few years and they are noticing a far greater increase in severity. Yet again this assripper of disease is playing us worse than the devil.
I think it has to be broken down into two main areas. Firstly, patient pro-action and medical consultation. As a team, we should be able to lay out our future needs. I don’t know how many of you have had conversations with your specialists about what happens next or in the event of ____ fill in the blank. It would seem that it is a very variable experience. Certainly, no one has discussed any future with me other than ‘oh, you’ll get a good 10 years if you are lucky’. Which as we know is utter rubbish and a cruel thing to say!
As patients, we need to be prepared for disease-related changes so that our caregivers and other medical professionals can support us appropriately. A collaborative approach to help us align with our choices and lifestyle and our future goals. With something as complex as PD I want to know the myriad of options before I have to make decisions live, as it were!
Secondly, there is the personal future. Our personal future. The one where we need to decide about what we want to do with the rest of the time allotted us. The reality is that at some point I will lose abilities in a number of areas. I can’t rely on a set timescale for this so I need to look at it now.
Between apathy/the state of the world/my limited financial/home situation/the nervous wreck of a collie/the climate/diminishing wine rack…Where do you even begin? At 46 years old I hadn’t imagined I’d need to be back at the what do I want o do with my life stage again.
I haven’t ever been a negative thinker but I find I have more clarity about the things I don’t want and surprisingly that is a good place to start the remodel. I know more and more what isn’t working and I am able to refine and start adding in what does work.
I am pretty much convinced I can write these missives and do my other creative bits somewhere warm and Italian. Possibly with a nice view over a vineyard…
What are your fears and thoughts about the future? Pop a reply in the comments 🥰