Should I highlight Parkinson’s on my Tinder bio?

Philippe's 226 Blog December 2024

I want to show that Parkinson's is not a death sentence. The best tool in my armory is hope, it inspires me to keep moving forward.

Welcome to my third blog, many thanks for the very kind feedback and words of encouragement I have received since I started this series, it really means a lot.

Today, I am chatting (waffling) about the stigma associated with Parkinson's ….. is there a stigma? In no way I am being judgy about how other Parkies manage their version of the disease, I am simply explaining how I am developing my own approach, it's "My World".

"I can feel that taste for life slipping away, And striking the lost chord I find nothing new to say"

My Diagnosis

In January 2023, I was chairing a meeting in a large room at the University of Leeds when I noticed the table was shaking ….. a lot. I scanned the room and prepared to throw in a humorous quip …… well humorous to me anyway 😊. I happened to look down at my left leg which was leaning against the table leg ……. shaking vigorously.

Eight months later, after a series of tests, firstly self-diagnostic then formally consultative, I was officially told "Philippe, you have Parkinson's". I burst out crying on the consultant

"Someone told me all dressed with nowhere to go, I should have that sinking feeling, my head hung low,"

I have entitled this blog Should I highlight Parkinson's on my Tinder bio? You know …. GSOH, OHAC, Parky!You will be amazed to know I don't have a Tinder account, but the question is an interesting hypothetical one. Should I keep this challenge to myself or talk about it openly?

My family teases me about how quickly, when meeting somebody, I crowbar Ironman into the conversation. For those of you who are new to my rambling, I have a bit of history with Swim, Bike, Run endurance triathlons known as Ironman.

"Hi, my name is Philippe, can you swim? Have you heard of Triathlon? No … well let me explain …." I like to hope I am slightly more subtle than that ……. Will this be the same for Parkinson's?

"Hi my name's Philippe, I have Parkinson's, do you want to see my Parky Tee Shirt 😊" surely not.

But this is my world today, my world you're living in every day. And this is my world today. And I couldn't have it any other way. In my world

It's said that over 50% of newly diagnosed People with Parkinson's (PWP) don't reveal their diagnosis for many years. It's only when symptoms become impossible to hide, even with strong meds, that they open up.

There are many possible reasons for the secrecy, but essentially, I suspect there are perfectly rational fears of discrimination, embarrassment, judgement, pity etc.

Remember, there's no judgement here, we're all on a different journey and deal with it in our own way.

"Well the mind has its reasons for talking aloud. But when people turn and stare, I feel so proud. The things they say won't come as any surprise. In an instant they become distant cries"

Family - In the months leading up to formal diagnosis, we had mentioned to the children (all in their 30s) that we were investigating some issues. By the summer of '23, my left foot was tremoring noticeably, so when we had days chilling and chatting as a family, it was reasonably obvious something was going on. We told the family pretty much straight away. I did not need to protect them, they provide wonderful support, honesty was definitely the best policy.

Friends – In the year leading upto diagnosis, a couple of pals had noticed that my golf swing was worse than usual – really stiff. We hadn't linked it to anything other than me being rubbish at golf. As a group of lads hitting our 60s, (friends from primary, secondary school, uni and local friends), we have often joked about playing top trumps with our various aging ailments – well my top trump card was Parkinson's, it didn't take long for the jokes to start (Shakin Stevens album anybody?) – which is ace and just what's needed.

Social Media – Let's face it, I'm a nosy self-publicist. Throughout my Ironman career, I drew great inspiration from the activities and achievements of others – yes you!!... In return, I was always happy to "open the kimono" on my life and gained immense strength from the support received. Maybe that's the narcissist in me.

I knew I wouldn't be able to hide Parky forever, so it was simply a question of timing. Having been diagnosed in August, I came out in November. The result for me was 100% positive – great support from many friends and also social media "friends". Yes, I did open myself up to unsolicited approaches suggesting alternative cures for Parkinson's, but that's life – I can take or leave what I want. BTW, there is currently no cure for Parkinson's.

"But this is my world today. My world you're living in every day. And this is my world today. And I couldn't have it any other way"

Day to day life – Very conscious that I don't want to become that bloke "Hi, I'm Phil, I have Parkinson's" I make every effort to avoid Parky being my one and only topic of conversation – after all, there's Ironman to drone on about😊. I sometimes fail but I am settling into a calm frame of mind, so improving.

A couple of months ago, I went to register my mum's death (she passed away in September). Registration is quite a bureaucratic event – you turn up with various forms of ID, hospice / hospital evidence and you answer a number of questions about the death. Caught in the formality of the meeting, I noticed that that the registrar was glancing at my tremoring hand, before I could think …..

"I have Parkinson's, that's why I am tremoring".

As a pitiful look developed on her face… "It's not that bad at the moment." Did I really need to do that? I'm not sure. In retrospect, I suspect I didn't want to appear nervous in such a formal environment.

At around the same time, a very similar scenario took place when I was picking up my passport from the French consul, where I said exactly the same things.

The other day, I found myself telling a random guy in the gym that I have Parkinson's, to explain why I am not as powerful in spin classes as I was – now that was unnecessary Phil – get a grip.

Parkinson's community - I feel blessed to have been forced, by fate, into the Parkinson's community. I attend between one and three Parkinson's session per week (table tennis / circuit training etc.). The group is fantastic, and we talk openly about our differing challenges. In those sessions, we are all very aware that we're not competing with each other. Quite the opposite, we are taking inspiration from each other, wherever we are in our journey.

Work – I retired from big jobs in May 2023, but may I still do some part time work if the right offer comes along. The big question here is would I have kept my Parkinson's a secret for as long as possible had I been working? The answer is almost certainly YES. I am pretty sure I would be doing my best to hide my tremor by sitting on my hand, not resting my leg against table legs, managing from my desk rather than MBWA (management by walking about) etc. etc. Sad but true, I would have feared being ghosted.

"And so the road from here is clear as day, the varied challenges we face will never go away. Each day we know we'll raise that chin, and show the world how to never give in."

We are all on our own unique journey and the privacy decisions we make are the correct ones, because they're our decisions.

So let's go back to my original theoretical question, if I had a Tinder account, would I highlight Parkinson's on my Bio – yeah!. I am not ashamed of Parkison's, and whilst I can't let it define me, the way I fight this will certainly become an immoveable part of my personal brand.

I want to grab hold of Parkinson's and swipe right.

"But this is my world today, my world you're living in every day. And this is my world today, and I couldn't have it any other way. In my world."

What next for this blog?

I'm enjoying writing these blogs – helps me fight the apathy symptom. As long as I can think of something to waffle about, I'll keep going.

This will always be an unscientific, unsanitised view of my specific experience of Parkinson's. Your feedback would be very welcome.

Just Keep Moving Forward.