12 very scary hours and then good service resumed

Everything is back on track now, and today has been good, but the 12 hours from Thursday at 11pm were far from fun. In my commitment to being open about my journey with the new treatment (Produadopa/Vyalex), I feel it’s important to share not just the polished, shiny moments but also the tough times. Despite this recent blip, the new treatment remains a true gamechanger for me – that fundamental hasn’t changed.

As I’ve said many times (and will continue to say), this is not a blog written by a medical professional. I’m only telling my tale. Research and studies take years and do so for a very good reason, but I’ve found through lots of feedback that my communicating my patient experience has provided valuable information for people with PD, their carers, and more people in general. It’s also – selfishly – a method of self-help and expression.

This, however, comes with a duty of care. From my point of view, I need to represent a balanced view of my situation and not just glorify the good. If I do that, I’m not being honest with those who read my blog or with myself.

Before the 12 Hours

Since the check-up I wrote about, health-wise, things have been very good. I mentioned in my last blog that I had started the withdrawal of the other two drugs I was on for PD – Sifrol and Amantadine. We agreed to drop the Amantadine from 3*Day to 2*Day and to drop Sifrol from 1.5mg to 0 over a short transition period of a few days.

The week was great health-wise until Thursday evening.

Sadly, as I had written in a previous post, one of my two neurologists tragically passed away, and on Thursday lunchtime, I attended a very sad funeral. Seperate to this I wrote a tribute which can be read here.

In the evening, I had a lovely dinner with friends, and all was  good. On the way home, I started to change.

The 12 Hours

They say that 24 hours is a long time in politics. 12 hours can be a long time – occasionally – in Parkinson’s. I’ve had blips before, which I’ve written about, but this one was really disturbing because it was so out of the blue.

To put it simply, the freezing and slowness of walking/shuffling came roaring back like a tsunami, if that is not a mixing of metaphors. During the night, I had a number of freezing moments. I woke early as usual but was completely incoherent speech-wise and incredibly slow. Sadly, I fell, but thankfully only once, and my wife helped me up. I did a boost on the new machine, and it helped a little. We actually took a video (not for publishing) of me doing the meds, which I did somehow but three times more slowly – it was embarrassing to watch. All was not good in the world and in my head.

I had taken huge pleasure from not having to use the walking cane/stick – but I had to rely on it again for a day…Thank G-d it has gone again.

Other symptoms came back – one of my most annoying ones in the form of ‘startle response’ – basically screaming when surprised. It came back but one time and one time only – when my wife came around the corner into the kitchen, and I didn’t expect to see her at that moment. I screamed so loudly it woke those upstairs up.

Once I had the chance to think, I wrote (typing was a nightmare) an email to the doctors, and we collectively thought it could be related to the fact that I had come off the Sifrol (Pramipexole/Mirapex) in the two days prior and had reduced the Amantadine by 1/3. I have had a history of less-than-good transitions, especially when reducing medicine (it happened with Dekinet and Azilect in the distant past). It seems that this time was no different.

I came back onto the Sifrol ER and Amantadine, and gradually over the next few hours, I felt much better. This morning I woke feeling great, did an hour walk and yoga routine, and had a good day.

As I said, I’m not a doctor, and there may, in fact, be no link to the drugs – it could just have been something else, but I personally think the link looks a little too obvious.

What Do I Take From This

I take many things…

1. The obvious: It is not straightforward to simply stop a drug that you have been on for close to 5 years without expecting any form of reaction. We will need to decide what to do in the future, but for now, it is once again my friend.
2. Not to panic: Okay, I panicked. Big time. Once we identified a plan and I got the email from the doctors, I recovered my sense of calmu. There will probably be blips for all people who take the transition as with other drugs – so have it in mind that a slip-up is not the end of the world.
3. The transition is not all singing and dancing: I have been speaking to another person going through the switch in a different part of the world, and it is taking them a significant amount of time and effort (and pain, nausea, etc.). It is perhaps not as simple as I have pointed out, and it is important people know this and don’t expect it to be a piece of cake.
4. Lastly, Parkinson’s remains and will remain for me a very dangerous and degenerative disease: I am a huge advocate of keeping positive and will remain so, but it makes a habit of reminding its hosts that it is there – I guess that will always be so.

Now

I am once again feeling good – as if it hadn’t happened. No one who saw me over the Sabbath noticed anything wrong, and that is great.

In Summary

I will continue to blog – for selfish reasons and because I genuinely think it is helping a number of people. The alternative is that patients don’t write about their experiences, and we all wait for the formal research to appear years later. I don’t think this is the right answer, but if people disagree with me, I am happy to listen.

It is nearly three weeks into the treatment and it is going very very well all said and done.

FYI – New Website (Still a Work in Progress)

I’ve decided to refresh the website I’m blogging on, with some very helpful input (okay – I did nothing, and an expert I hired on Fiverr did all the work 😊). I hope it’s more user-friendly – the truth is, it was horrible, and you all suffered in silence. I’m obviously not doing this for commercial purposes, so don’t expect it to be fancy.