Parkinson’s – all good but a scare – it really could have been a lot worse…but it isn’t thankfully (TG)

Since I last wrote nearly 6 months ago, things have been good, great in fact, except for a couple of very terror filled weeks which thankfully ended with good news.

As always, this is as much for my benefit – as a record of the journey – and therefore I have been and will continue to be candid about my experiences.

So as always, the positives…and a couple of interesting stories.

Generally day to day I am fitter, stronger and coping better with PD. I am keeping up my regular routine and in fact have increased the exercise component to start to include Pilates with the Yoga, Boxing, Running, Walking together with regular and fascia Physio and Acupuncture.

I am working hard and take great pride in the great work my team is doing.

As I mentioned in my last blog, PD has not stood in the way of anything I have been doing so good news all around. Mentally I am strong although my short term memory leaves a lot to be desired (see below) – I am learning to write better notes on my iPad to compensate. I am really, genuinely grateful for this period of time in which things have generally been on the up.

There are some more than annoying things which I have to be more careful of which have emerged or re-emerged….

1. Choking – A few times I have choked really badly and I need to work hard on the basics – eat slower, eat more carefully and generally not try to stuff in dry food whilst walking around on conference calls – yes it has happened but it has also happened drinking water, eating a carrot and eating a grape…
2. Sleep has come back as an issue – one I thought I had nailed….I am again waking up in the 3’s and can’t get back to sleep…as with choking I need to restart with the basics…go to bed at the right time (not too early etc) but people with PD will know that it is not so straight forward
3. The sleep talking has notched up a level and amusingly/scarily led to a story which was funny with much hindsight. I was working from home one day and decided to take a short rest. I found myself in a very vivid dream about work, the office, phone calls, Siri etc – I remember it so well. Anyway this sleep and dream was interrupted by someone from the office talking to me on the phone along the lines of “Ben, Ben, Ben you called me etc”….yes, I called them…by saying “Siri please call xxxx xxxxx xxxx’ aloud in my sleep into my airpods. It was a very strange experience for me and my colleague…but I guess it was lucky I was just dreaming about work.
4. A few people have noticed that I smile less – someone stopped me in a store and said ‘why don’t you smile’, one of my friends said the same. There is something called the Parkinson’s mask…I seem to have the start of this which is new. I also – as those who love me the most have said – am more distant and less empathetic at times. Both of these are I would say mild/borderline but I do feel a change and make eye contact less and less.

The tremor is much better (almost negligible) but it is due to the increase in Sifrol – although it has its impact on memory (see above) and both my doctors are looking to get me off Dekinet and reduce the Sifrol with a potential increase in Stalevo…today actually is the first day I start the reduction of the drug and I guess we’ll see how it goes (last time the attempt to reduce Dekinet failed and I ended up for two weeks feeling like I was 30 years older)

So basically apart from a few minor things and the prospect of a reaction to the medication change, all has been good….all except a major scare which turned out ok. I am now writing about it because it has given me some real context on my PD situation.

About four weeks ago, my wife and I went for a routine appointment with my private doctor who I had not seen in a year. I was almost tempted to cancel because I have been feeling so good. Anyway, he noticed a deterioration in my balance, was concerned about the ongoing choking and more importantly spotted that my vertical gaze (my eye doesn’t follow his finger when it tracks up and down) was much weaker. Anyway he asked for an MRI. It turns out he was looking to check for PSP (Progressive Supranuclear Palsy). This is truly a horrible prognosis and a quick google shows it has a very much lower life expectancy than good old PD (single digits according to many and generally very unpleasant years). What made it all the more stressful was an MRI I had for a research project a few months ago which although was clearly really bad quality (and not really usable) on initial review it seemed to show something unusual on the Brain Stem where this PSP is identifiable. Anyway for about 4 days until the MRI we were living with a potential prognosis which terrified us but thankfully (Thank G-d) turned out to be clearly ruled out by the new MRI……never have I or my family been as grateful for regular PD.

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Postscript 2025 –

I was incorrect in my knowledge at the time and thought the MRI was conclusive – but I didn’t understand – or perhaps want to understand – that the MRI is not conclusive especially for PSP-P as opposed to PSP-RS (two leading strands of PSP – with PSP-P the one that looks more like PD and has less prominent midbrain atrophy.

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What have I/we learned from the experience – apart from learning how stressed waiting for test results can be, we actually dealt with it well – a combination of prayer and humour got us through (albeit with bumps).

One of my friends told me about the story of the Rabbi and the Goat –  A farmer lives in a house with his wife and children and the grandparents, and it is so noisy that he thinks he will go crazy. The rabbi advises the farmer to bring his animals into his home, too. First chickens, then goats, then sheep. The situation goes from bad to worse. Finally, the Rabbi suggests that the farmer take all of the animals out of the house. When he does so, the farmer’s family finds the home very peaceful. I feel a little of the same way – the PD is still there and will continue but it is a lot lot better than for a few days I thought it would be.

As I have written before, it is a long game with good moments and less than good moments…humour and positivity is critical. I can’t say that I always have it but it is my goal to live with this attitude.