Top Five PSP changes to have come from my Diagnosis?

What are the Top Five PSP changes to have come from my Diagnosis?

What are the Top Five PSP changes to have come from my Diagnosis?

I thought about this question a few moments ago as I sit here at 2 a.m., unable to sleep, and oddly, the list is completely different from what I would have thought of if someone had asked me 10 or 20 years ago, and even 6 months ago.

It is just my list – completely subjective and prone to change on any given day – but I think it offers a slightly different perspective from the total destruction and fear that I would have predicted. Of course, my wife, kids, friends, and others around me would have a very different list, but this is a patient’s view.

The first thing I must say is that I originally started this blog with “10” in the title, thinking I would be able to rattle off so many changes. But there weren’t actually that many, mainly because my journey happened in a staged way – with an initial diagnosis of PD. Therefore, the transition to having a degenerative neurological condition, the shift from no exercise to tons of exercise, a change of diet, and the introduction of vast amounts of medications were already on my list. I lived a relatively regular, if substantially adapted, life in the first five years of supposed PD, albeit with big changes. The diagnosis with PSP, alongside the actual fundamental change in me – which was so rapid and brought on the diagnosis – was like slamming on the brakes in a way that PD wasn’t (although I thought at the time it was).

Trust and Loss of Control

I have had to learn to be increasingly, and at times approaching completely, reliant on those around me. No longer able to do the most basic things – like work, drive, walk, and with choking starting again, probably a new set of things soon like eating – I have had to start being a “taker” and a “relier” on others, rather than an impulsive, strong-headed doer. It is so, so hard.

A brief example highlights this. A close friend needed something last night – he asked me if I had “x.” I said yes, and he said he’d come over. I immediately jumped in my electric wheelchair and drove round. When he asked me why on earth I was doing it, I told him: to have the chance to actually do something for someone else, fully by myself, is simply rare beyond belief, and it gave me, selfishly, unbelievable satisfaction.

I have an awesome team, starting with my caregiver – my wife of 28 years – my kids, my mother and sister, and lots of great friends. I just have to now learn to trust them and relinquish control, and it is very, very hard.

The Speed

You need to be ready to respond to very rapid changes. As I look at my own timeline, I was running 5k in January, then moved to a walker, then a wheelchair. We started a home renovation project a few weeks ago, having spent weeks debating the cost (okay – I spent weeks needlessly debating the cost and design because, in truth, I didn’t want the project for emotional reasons). Now I need it and am realizing that it’s possibly going to be needed much quicker than I ever thought. The speed is insane, yet…

Time Has Gone in Reverse

I have retired from a roughly 14–16 hour, six-day-a-week job as Partner and Head of Consulting for a large firm. My days were simply full, back to back, and as I grappled with Parkinson’s, I tried my best to manage it – albeit on the losing side. My neurologist – with brilliant insight, in my view – told me to stop working rather than make more and more efforts to improve the situation, and we hit full stop.

Given that I hardly sleep, I now have so much time, and that time is ever harder to fill. I find reading and TV hard because of my vision. I find going in the car hard because my knees hurt so much. I am (from time to time 😊) ratty, annoyed, wallowing in my own misery, and I am at home all the time. Time has oddly slowed. As there is no treatment (conventional at least) for PSP, I also spend much less time researching, changing meds, hospital appointments which is strange – I have a rapid terminal condition but there not much I can do about it (except for spiritual and physical conditioning etc).

I am filling it with writing, chess, some mentoring, and more time on spiritual learning (I am a religious Jew), but still, the cadence of the day is completely different. It makes me a grazer in the kitchen and a very restless person – but has opened my life to chess and lots of other things I glossed over before, such as listening to my youngest play guitar.

Meaning

I was going to put this number one… and I would love this to be number one in reality, because in many ways it is. But it would be disingenuous, because I wish I had the depth of spirituality to let it trump the others. Still, I have found a much deeper sense of purpose and meaning in the last few months.

As Viktor Frankl (who is more than qualified, since he survived three concentration camps) said: “Those who have a ‘why’ to live, can bear with almost any ‘how’.” I believe in G-d and that there is a reason for this, even though I don’t know why. Given the choice, I absolutely wouldn’t choose it, but I have meaning and purpose in my writing, in the conversations I have with people, and in the time I now have to spend with my kids (when I used to be on the road so much in the past).

This is the most unexpected change, and I am so happy it’s on the list. But my personal advice to anyone is to change your life – your work/life balance – by choice earlier and not be forced to by something as utterly horrible as PSP. Similarly, my stress level and general calmness have improved considerably, but again, that’s a reflection of my past life.

Finances

I debated putting this one in, but I can’t pretend it doesn’t exist. It’s a huge issue for everyone. Thankfully, I was doing well in my career – I started with nothing, so had no silver spoon, and I worked more than hard – but to retire at 50 is not simple financially and took a lot of initial stress as I worked out the details of retirement and various issues like insurances, pensions and benefits. It’s also not so simple for my wife, kids, and family, who had expectations and needs that suddenly had to change.

I’m truly not complaining, and the fact that we are okay is something I’m truly grateful for. The reason I include this is that, whether we like it or not, it’s there, lurking as a huge reality. We’ve had to rebudget, rethink the future, and I know this is simply a massive issue for others when change of this magnitude hits.

What’s missing…

The list is completely different from what I would have expected. I would have guessed pain and discomfort (yes, there is a lot, but it’s nowhere near the top five although at moments it battles to be no 1 for example yesterday when I fell or the day before when I couldn’t read the screen of my phone with or without my prism glasses), uselessness (I write about loss of control, but I don’t see myself as useless – at least at this stage), depression (which I have fought so hard to suppress), frustration at not being able to travel and go places, fear of the future and of death and incapacitation, and despair (which I simply don’t feel). This is really surprising to me, and in many ways, it makes me feel so much more positive when I think about it. As I’ve said a number of times, the fear seems worse than the reality.

But…

What scares me about the future is cognitive impairment, which is on the list of symptoms, and behavioral change, which has begun. These are more in the scary bucket for me, but when they hit, I doubt I’ll be able to blog about these things. This may do a disservice to people with PSP who read this and feel I have understated the downsides. I apologize for that.

Let me be clear: it is a truly terrible disease and has already changed our lives beyond imagination. I would never choose anything like this, but life is about adapting, and this is honestly how I feel at this juncture.

There is a sixth change I debated – Guilt. While life has changed for me, it has also changed the lives of those around me. It’s impacting my kids’ lives and especially my wife’s – probably more than mine, but wider I had to disband/transition a team at work which impacted people I had trained and nurtured. In this respect, I was going to put guilt on the list, but as a religious person, I accept that there is a reason for everything. Ultimately, I didn’t choose this, so I’m going to try to put guilt to one side.

Having written this for 60 minutes, my arm is killing me from ache in my shoulder (which momentarily is trying to push its way into number 1 slot) and I can’t see the screen properly, so I’m going to sign off. It is off to Yoga (after I spell check, translate and publish).

I don’t know what list other people have and the list exists for people not just with PSP but PD and many other conditions.

I’m interested in your thoughts, but having done this exercise for myself, I actually feel more positive than before I started it.

I wish everyone well (or as well as can be).