Apparently I have a tendency to repeat as a mantra over and over again the phrase “I am ok”. It finally only sunk in that it was not the case when my daughter told me in stern language – “Daddy – you are NOT ok.” As usual, she was right.
I have come to learn through writing this blog that it’s more than just an opportunity for me to spend some of the time engrossed in addictive behavior at odd times of the morning, or in this case on a flight back home, some people find what I write useful in a world in which as someone told me “The neurologists don’t give us a handbook.”
Over the last few weeks, I have been sharing my journey with the new Produadopa/Vyalev pump. It has had an amazing effect on my day-to-day life – truly transformational, and I wouldn’t swap it for the world BUT like a top-class goalkeeper, it still lets some really good shots through – every day is not a victory for the best team. On three occasions, I have let in goals and the pump, or my use of it, has not seemed enough to prevent it. It is important that all people who are considering the amazing pump understand that it is by no means foolproof.
In that spirit and probably in a single appearance only, I have decided to write about a few hours yesterday when Parkinson’s played its hand and temporarily had me on the floor. This is not designed as some weird macabre self-reflection but for people to understand what it is actually like to have PD or to be with someone who has it. I am not for a second saying it is better or worse than other conditions – it is unique but when people like me are diagnosed and hear terms like balance, shuffling, and freezing, it is often very hard to conceptualize what this means. I think understanding – as hard as it is – helps so for that reason I am posting this.
Please believe me when I say that I do not do this for the fun of it…I am not attempting to write a fast pacing movie segment but at times this disease feels more like fiction than reality and yesterday was one of those times.
At approximately 12:30 – four of us – were entering Camden Market in London – a very popular place on a Sunday and very crowded. With my new friend – the Produadopa/Vyalev pump – I felt 100% on top of things and enjoying the moment. It was cold but not terribly so. We started shopping and all was good. I suspected nothing!
We shopped and about 10 minutes later I started to feel ‘off’. It is not a description people will readily understand – it means to me that I started to not feel totally stable in my movement. More a feeling than anything else, it now sends me a signal to be alert. I took out my foldable stick and used it to walk more carefully. At this point, I was fine – probably 90%.
We had a lovely lunch (for anyone interested there is in fact a kosher street food/shawarma restaurant at Camden – but this is not a traveler’s blog) so I will leave off the food review, but it was good.
We started to head back from the restaurant and by now my gauge was at about 70%. My body was much slower and I found walking a little harder. I wanted to get back to the train station. I was now noticeably ignoring the conversation and discussion and not responding to questions – I was in a tunnel which was narrowing. I was still fully compos mentis and aware of my surroundings.
At this point, the ‘I am ok’ started to kick in almost continually. I am not sure who I was trying to fool but I must have said it 100 times. We entered the train station and I reckon I was a solid 30% – the tank was ebbing. I couldn’t stand unaided and had to be helped to the elevators at Chalk Farm Station.
As we walked down the stairs to the train, I simply could hardly walk and keep upright, and my brother was effectively shadowing / manhandling me – 25%.
The train came and I got on and sat down (I debated for a split second taking the seat reserved for the disabled/elderly but ‘I am ok’ prevailed and I sat elsewhere.
The 20 min ride to Edgware passed ok but my body was in shut down mode. I was listening fully to the discussion as if it was happening around me – I would not make eye contact and found moving my head from side to side very hard. My wife and friend later told me that a sort of grayness had set in and I had lost the color from my face – ‘a ghost’.
We got to the station – Edgware – at the end of the line. Getting up to the ticket hall took 3 phases. An elevator/lift which was ok, a walk to the ticket office. This took absolutely ages as I was in full shuffle mode – I was taking baby steps and then I froze until I kind of got my act together again. I insisted on being left to walk myself and the obvious happened – I fell backward instantly…but instead of falling I was able to catch myself and took about 10 steps backward before I stopped the fall. Had there been stairs or any obstacle there – who knows what would have happened. I guess 10% is about the right score.
A friend came to get us and getting into her car was let’s just say not quick or slick. I once stupidly described myself in the context of 007- this was more like 107 years old. 8%.
We got the house and I couldn’t get out of the car and fell – sort of just stood and keeled to the side with no ability to stop myself into my wife and the two of them somehow managed to prevent me from hitting the floor. 5%.
We got inside with help from a friend and I sat down – it took about 10-15 minutes and a boost on my pump. The color came back to my face/cheeks and the balance issue faded. I needed the stick but was much more confident and able to make eye contact and talk. 25%. I went to bed for a couple of hours (as you may know I hardly sleep and this is clearly a factor in the whole equation). I woke up and felt at 65% and by the morning was feeling at the 90% range. I am now on the plane and feeling pretty normal.
The friends and my brother who saw it for the first time saw a very different me – one who seemed to have little to no ability to control his movements and who would annoyingly constantly say “I am ok.”
Why did it happen? It is a great question, and it is the third such incident since the Produadopa/Vyalev pump was fitted. The initial thoughts are that I should be using the ‘high’ setting in environments where there are crowds/lots of people. The last time I fell, for example, was at a wedding. Sleep deprivation is also a critical issue to address. It really worries me due to the unpredictability of the occurrences and the fact that the change in my body’s dopamine level seems to change to levels in which it can’t cope.
We will, however, get to the bottom of it hopefully and I am going to have to learn the art of preventive medicine – not doing too much, getting the right settings on the pump, as well as sitting down and taking some time to stop the drain.
I must learn how to stop the stupid waste of time and damage that comes from the use of ‘I am ok’ – it doesn’t help and arguably makes things worse.
I need to get a game plan in place for before, during, and after these episodes and I need to do it fast.
I have no idea if this experience is similar or different from others with PD – it seems to me that my case has been in some ways irregular. For 4.5 years in my tremor-related symptoms are very mild but the balance, shuffling, and freezing are in some respects pretty advanced. I have no idea what this means for the future – I don’t think anyone does.
So the plan to deal with the freezing? I am speaking with my doctors. I am going to get into a better routine regarding dosage in different conditions and I am going to keep fighting. I am also going to learn to prevent more effectively these events from happening by planning my days more carefully and by trying to crack the one nut I have not so far solved – sleep.
I hope you are still reading … I am very keen on feedback (preferable positive but my brain as opposed to my heart truly wants to hear criticism) and comments and ideally good ideas.
**As I am new to this please help me by sharing or forwarding to others so that I can reach out as much as possible **
5 Responses
Hi Ben, I don’t know if this will get through, as I wrote one such reply a few weeks ago and don’t know if it reached you. My grasp on technology is not so good anymore.
Anyway, regarding this, and a recent post about telling people of your condition/explaining it –
When you start to get the ‘off’ feeling and recognise its potential for mucking you up, do you experience, even while saying ‘I’m ok’, a rising feeling of panic? And if you do, could the worsening of the symptoms be due to the ‘panic attack’?
I have had fairly frequent ‘funny turns’ over recent years, not connected with movement (though I have had a few fleeting early warnings of such a thing happening) – no, mine can be when sitting and relaxing, often after eating. I start to feel lightheaded and immediately panic, till I’m not sure if what I’m having is a panic attack, or an episode related to Parkinsons, or something else. Maybe a combination, and the panic makes it worse. When it gets bad, I also can’t speak to anyone and just want to sit with my head down and have someone close by just to be there.
Drinking water does me good then. Could it be dehydration?
And that is a feature of getting Parkinsons in older age – you can’t always be sure if certain symptoms are due to the Parkinsons, or if it’s something else. Maybe just the downside of increasing age. But I will know, if I start with the freezing, that it’s definitely the PD.
I don’t suppose that certain recommended techniques could help deal with the feeling of losing your place in the world, when gravity abandons you, or your feet won’t move?
I can’t share your specific experiences or your early onset – I hope you get feedback too from someone with early onset. (I’m convinced though that my symptoms started many years before it became a recognisable problem and was diagnosed). As you say, we are all different anyway, despite sharing the same condition!
Than toy so much for this and I will give it a lot of thought. Really appreciate it
Under any stressful situation, even enjoyable ones e.g. parties with friends, excursions, I very easily “lock down ” regardless of peak dose meds. Mickel therapy has taught me to let the panic do it’s worst…..really wallow in it . That only lasts about one and a half minutes. The surprise anxiety is processed, and I can move on gradually getting back to “normal “. It takes practice to allow the panic to fully run its course, and the panic time gets shorter. Fear is the driving force of this disease , but teaching our brain not to “fear the fear” gives a bit more control. I hope this is helpful!
Thank you very much
Freezing is my worst symptom. I don’t care as much if it happens in my home, as I have devices etc. that can “pull” me out of a freeze. (vibrating shoes, red lights, walkers etc. I can pick my poison) But when I have to go out in public, I try to prepare and have crutches or a lite weight w/c along, with extra c/l and apomorphine. I have to plan .