“All Change… Mind the Gap… All Aboard” – As someone who spent years commuting on the London Underground – The Tube – these expressions were part of my daily life. I never imagined I’d use them to describe how I feel about living with PSP.
The last 48 hours have been completely ordinary, with no major revelations, yet they somehow capture my current state – and it’s strange:
- Emotionally: I took a short trip north with a friend, reconnected with another, did some mentoring, and enjoyed the perks of retirement – watched a show with my wife in the afternoon, travelled spontaneously, and felt relaxed. It has been great!
- Physically: Things are improving in some ways. I’ve maintained my daily yoga, added Pilates twice a week, and work with a personal trainer weekly. I feel stronger.
- Yet… PSP remains. It showed up three times in particular:
- My right eye involuntarily closed during parts of the day, a continuation of last week.
- During a gym session with my trainer, I couldn’t stand up from a specific seated position, no matter how hard I tried.
- On a walk with my wife, I couldn’t make it home and we had to call for a ride.
All Change
The degree of change is staggering. I used the PRO-PD (https://pd-symptoms.com/) app to score my subjectively symptoms compared to January 30th. My score rose from 1180 to 1560 – a significant shift. It’s not just the score, but the intensity and variety of symptoms that are overwhelming. If this weren’t documented, I wouldn’t believe it myself.
I created a chart to visualize the differences. It’s not scientific, but it helped me understand the journey. Please do not use it for medical purposes as it is subjective, of course. But it simply changed.
Mind the Gap
The transition to retirement, a new diagnosis, and a new lifestyle has been tough. It’s not a walk in the park. It hits physically, financially, and emotionally.
It’s worth pointing out that it comes with a complete change in the inability to rely on the medicine you once thought you couldn’t live without, and it makes a person vulnerable. I nearly fell for a pyramid scheme selling an expensive “miracle cure” using emotional manipulation like “do it for your grandchildren.” Thankfully, I avoided it – but I’m sure many don’t.
Now, I’m finding rhythm in retirement and believe I’ve passed the hardest part of the transition. I’m actually enjoying life and finding an added sense of purpose – though I never would have asked for this. As they say, Man plans, G-d laughs. My attitude feels strong and positive. I am grateful to G-d for this current clarity.
All Aboard
This is my reality. While I pray for a different outcome, I understand the direction PSP takes. A therapist once asked me:
“If three years ago you knew you’d be using a walker, forced to retire, unable to drive, and dealing with discomfort – how would you feel?”
I said I’d be as depressed as it is possible to be.
But I’m not. I’m genuinely happy. I wouldn’t trade places with anyone, no matter the wealth.
My diagnosis, prognosis, and circumstances have changed – but the things that matter haven’t: my family, my sense of meaning, my belief, and my attitude.
This might be harder for those around me who only see the physical changes. But if they read this, I hope they hear me (not that they read this – so drowned in my posts are they 😊). I am happy and deeply grateful to them and to our sider friends our support network.
I refuse to be defined by the chart above. But I needed to understand my journey.
I hope science advances to make diagnosis, treatment, and care easier for others – and protects them from exploitation. For now, it is what it is. And I’m going to enjoy the rest of my “day off.”
The next train is approaching the platform and I had better get on it – I think it’s a slow train today 😊
