Parkinson's, reflections on the first six months, and recommendations
What I've learned, gained and lost in the six months since diagnosis
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December 4 marked six months to the day since I heard the words: “You have Parkinson’s”.
Or rather, I heard a reluctant confirmation in response to my seeking clarification.
Consultant: “So your head and shoulders MRI looks normal.”
Me: “Great.”
Consultant: “And your DaT scan shows signs of abnormalities. So…”
Me: “…so you’re telling me I have Parkinson’s?”
Consultant: “Yes. Sorry.”
Arbitrary anniversaries prompt reflection and I’ve been thinking about what I’ve learned, gained and lost since finding out.
Given I was recently lucky enough to spend Thanksgiving in the US for the first time, in that spirit, it is tempting to prioritise the positives.
But, of course, life with Parkinson's is not an endless list of joyful endeavours.
Consultants don’t shout 'Congratulations' at you when breaking the news. They offer consolation.
And while I have no desire for this or any other post to turn into a long list of moans or complaints, I do feel an obligation to be real. Anything else feels almost disrespectful to those suffering from it a lot worse than I am.
There is a chance that I get carried away with the positive feedback I've received so far from writing this blog and begin to pen future updates in a way that almost games engagement rather than offers a true reflection of my experience.
Ricky Gervais often recites a quote along similar lines: “To lead the orchestra, you’ve got to turn your back on the audience.” It's always stuck with me.
The reality of the first six months with a condition which is presently incurable and degenerative is that, unsurprisingly, it isn't that great.
When I first started reading up on the condition, I saw stories of people taking months or even years to accept and process it.
For me, there was around 4-5 weeks of grief-like feelings in the day and literal nightmares in the evening before, to lift a phrase from lockdown, I began to approach my ‘new normal’ more constructively.
The reality is that everything seems double-edged. New positives and negatives are being created in equal measure.
There is a sense of liberation to suddenly being given license to prioritise things that make you happy, but the list of things you're physically able to do with a movement disorder which is taking root in the right side of your body will reduce.
You gain greater clarity on topics such as the optimal work/life balance, but you also have to accept that your career trajectory and earning potential have likely diminished.
Professional ambitions and the ability to take risks now play second fiddle to pragmatism and the necessity to save for a future where you won't be able to cope with working in the same way or may need to pay for extra care.
As evidenced by my perplexing-to-some decision to travel to Wisconsin in wintertime for a week to watch the Green Bay Packers play, I'm trying to chase joyful experiences and more consciously look for extra snippets of satisfaction in the ordinary day-to-day.
A high-profile sufferer of Parkinson's gave me the advice to always have something in the calendar that you are looking forward to. There is also a sudden need to front-load your life if only to help stave off the fear of the unknown future and how this lack of dopamine will manifest itself.
People who I've told about this condition or met because of it have, by and large, been really helpful and supportive. For example, the specialist staff at the hospital I attend have been fantastic. The reassurance this provides slightly softens the realisation of a life where regular hospital visit will always be a thing for you from now on.
This new normal opens the doors to new networks, along with those you are now consciously manufacturing, but you walk through them a less confident person with more insecurities.
Even in just a few months, I've been pleasantly surprised by the number of online connections I've made simply by writing about my initial experiences here and how much I've come to value the reciprocal support of strangers in similarly shaky boats.
The Zoom calls put on by Parkinson's UK or Spotlight YOPD, where you hear from others with the condition about their struggles and solutions, are undoubtedly sobering, but are also some of the times since June when I have felt most relaxed and hopeful in a strange way.
The physical reminders of Parkinson's are always there from morning to night, along with the thoughts which accompany at them. The bad voice whispering into your ear, sitting on top of your bad shoulder.
Yet, overall, six months in I feel in a much better place than I did after one month. I have no doubts that that is partly due to the decision to learn about it, write about it, and approach the whole thing with more transparency rather than trepidation.
The worst is ultimately yet to come, but if nothing else, these posts can serve as time capsules that I or others can read again one day and hopefully find comfort in.
This week in the Parky blogosphere
One of my favourite podcasts is Packers Transplants by CheeseheadTV, which includes a segment called "This week in the Packers blogosphere".
The premise is that the hosts highlight features, articles or other forms of content they have enjoyed that week and share it with a wider audience.
I'm sure you can see where this is going…
Below are some recommendations on posts and people relating to Parkinson's which I believe are some of the best representations of the online #PDcommunity.
Emma was one of the first writers on the subject I found after being diagnosed. She has a wonderful writing style - warm, engaging, honest and funny in equal measure. The link above is her reflective 2024 year-end post. She also has a pinned ‘Start here’ post, which I suppose would be a better starting point for new readers.
I should likely have already added her to my list of Substack recommendations, but will change that shortly.
(Substack won't let me embed this post, but here is a link to it.)
Esther has a good-sized following on Instagram, and recently shared my page with her followers which was very kind.
Even if she hadn't, I would recommend her account which Is full of videos like the one above that show the realities of the condition. This one has nearly 10 million views alone.
You only have to look at the average comments section to see how her posts resonate with her followers. The visual element is key, as several people with the condition report that the feeling of being ‘seen’ is such an important one.
This particular post strikes a chord with me. I spent over a year confused as to why I couldn't find a pair of shoes that were comfortable for both feet, with the right one a persistent problem.
Like several other minor niggles and complaints that had been building up, since June 4 they have all started to make sense.
(If you're in this position too, then go and buy the Hokas They've made a massive difference and helped to get me through more than 140,000 steps across seven days in Green Bay.)
Reason to be optimistic this week
Parkinsonism & Related Disorders: Total physical activity, plant-based diet and neurodegenerative diseases: A prospective cohort study of the UK biobank
Get in touch
If you'd like to discuss anything related to this newsletter or something I've written, you can email me, leave a comment below or reach me on a couple of different social media platforms.
One final thing…
A main reason for writing this newsletter at all is to find and connect with people in a similar position.
YOPD is a niche condition and potentially a lonely one for people without a physical or digital support network.
Please feel free to share this your networks to help it find someone who may benefit from being part of a relevant community.
Lots to unpack here, but as a year sixer the element that most jumps out for me is ensuring that you always have something in your calendar to look forward to to. I would add, "Say 'yes'" more and actually choose to do things because you truly don't know if you will be able to do them in the future. I carry a bit more credit card debt than I like to, but also memories more priceless than things
Another insightful and uplifting read. Well done! I hope you had an enjoyable trip and received your share of Midwestern hospitality . Thank you for the kind recommendation as well. It is appreciated!