To be open about having Parkinson’s…

The last day has been a tough one physically and mentally, as PD has again decided to remind me of its presence in a very public and brutal way. But, as I am feeling pretty good again this morning and am heading soon for the airport, I prefer to skip this for a day or two and reflect on a big topic that a lot of people have raised.

There is not too much written about this that goes beyond pretty general information, and it is an absolutely critical topic. I share simply my perspective as a patient and as someone who talks to others. No one should rely on me in this respect.

My summary: If I had to summarize my prevailing view, it is that I wouldn’t change much about the way I acted in terms of the speed of getting it out in the open, as I think it has huge benefits, but I would be much, much more deliberate, strategic, and planned were I to have a second chance (Heaven forbid). I would take a moment or two, or a lot more, to think about those I am telling and how/what to tell them, and to lay the narrative more carefully once I was clearer on my game plan. I don’t think holding it close helps long term, but it is more a question of when, how, and who. In any case, I personally feel the initiative should be seized by the patient and not by the disease. Ultimately each PD journey is different and each one of us is different so you will need to decide on the strategy right for you. No one can tell you what is best. Anyway here are my thoughts and ideas.

PD, unlike other illnesses, can give some choice: Some illnesses do not offer much in the way of choices about whether to be open or not. Some are sudden in their onset or so physically or mentally evident that they leave the sufferer with little choice but full disclosure. Conversely, some remain very manageable privately that they don’t require or need disclosure—albeit this comes with very real emotional challenges. Parkinson’s is a dangerous beast in the middle.

Often not 1 or 0: For some, diagnosis takes a long time and is a gradual realization, which in itself is a challenge, as for many it is the being without a diagnosis and a resulting medical protocol or designated community, and for many of these people it is actually a strange kind of relief to find out what you have. In this gradual case, it becomes more a question of how, when, and who you disclose the PD to as opposed to one big bang moment.

A crucial decision for you and others: It does, however, represent an absolutely huge decision for you and for those around you, and it has major impacts potentially on your working situation/income and on your prognosis. Spouses, children, relatives, and friends are all impacted in a big way, so it needs some thought.

My onset: I had a very atypical journey, which you can read about on my first blog on PD. For various reasons, my onset was incredibly sudden and clear-cut. In that respect, I was in hindsight hugely fortunate. I was hospitalized, and after 8-9 days following the ruling out of pretty much everything else, a DATscan (followed a few weeks later by a second DATscan by a research university), physical examination, and response to PD medication, I was given a very clear diagnosis. One of the doctors said to me at the time: “I don’t know how it came on so fast, but I would use your DATscan image in a textbook for what to expect to see in a classic case of PD.” They also ruled out any genetic link, which was a relief to me.

My decision: I used to be, before this blogging started, a pretty private person, but for some reason when I was told (I was told by a doctor alongside my son who was with me in the hospital), I decided instinctively to be open and transparent about PD. It is the same decision I have made the whole way along. It was not based on any deep thoughts, research, analysis, or study—it was a gut call which to this day I am grateful I made. On a personal level, I can now rationalize it many ways, but it was, as I said, an instinctive call. I think I would unquestionably do the same again with the knowledge I have, but it is impossible to know for sure.

I will be honest with my readers: I should have thought it through and discussed it a little more with my amazing wife, but I am a stubborn person and knew there was absolutely no way I could live life keeping such a huge part of me hidden—it is just not me.

There are, however, serious pros and cons which I will dig into a bit.

The advantages of being open:

It is hard to be objective, but I always try. There are all the standard answers such as emotional support and better ability to access resources, but I will list my personal top ones:

Setting the narrative – probably the most real reason for me personally was the ability to set my narrative. Many describe me as a control freak, and it is partly true. I know what late-stage PD looks like, and I wasn’t in that situation. At the time, it was a situation that many people may not have known my condition. Emotionally, it felt that if I tell people proactively, then I can set the narrative and send the message that I am in this fight and that they will understand my evolution as the disease moved forward. I hate pity and sympathy, and this would be the least bad path to managing it. This was my overwhelming emotional feeling, whether valid or not.

Efficiency and focus – I decided to treat this as a project—just as I do work where I am a consulting partner. I now know the ‘enemy’ and ‘mission’—to avoid the truly nasty parts of the disease for as long as possible, to benefit from science as it innovates, and to live life as normally as possible for as long as possible. I felt that this simply can’t be done behind a veil—I have to marshal resources, engage with professionals, and focus my actions—this has to be done out in the open. Time is, after all, a very precious commodity and the ability to move quickly helps in my view exponentially (getting into a routine, etc.).

One less burden – There is simply so much to take care of and worry about—the hundreds of pills weekly (I was up to 24 a day before the Produadopa/Vyalev pump), the daily yoga, exercise, therapies of different nature, appointments on top of family, work, and other commitments. The additional burden of having to keep it all confidential is a huge additional pressure and strain to it all and involves a degree of misdirection that I personally can’t do anyway.

Support: It is crucial to have support with PD—you need people to help you, guide you, support you, and distract you from the nightmare. There are so many good people around most of us, but to help, they need to know. Telling them in a way they can digest and then support is key.

(NOT ONE OF MY REASONS BUT A LOGICAL ONE) – Why should I not be open– For whatever reason, God in whom I trust genuinely, has decided that this is my life challenge (along with a couple of others), and it is a dangerous and nasty degenerative disease (which the last day has more than confirmed for me). Why do I need to hide that? So what that I look or will in the future look different—if people can’t cope with that, then that is their problem, not mine. In reality, however, this is a logical argument which I didn’t have at the time—emotionally it didn’t rhyme with me or reflect how I felt. It is something an activist or someone who has rationalized the challenge will say but not a newly diagnosed patient. After all—who really wants to be the person who shakes, stumbles, freezes? Truth is, NO ONE wants it. These, and I am sure many, many others, speak about being open early.

BUT WHEN IS A MORE SUBTLE QUESTION

There are, however, a number of reasons to hesitate and take time or delay the decision… I group it into four…

Time to process – I know a lot of people need time to process and get their heads straight and settle on a plan, a strategy, and a narrative. I rushed out of the gate like a madman on steroids, and although I don’t regret this, there are definitely good reasons to get your game together.

The right message – Forming the right messaging to your kids, grandchildren, family, friends, and often, sadly but realistically, the key one—your employer—is really important. The first few in the list are largely from an emotional perspective—especially as chances are that other things in life are happening as PD doesn’t happen in a vacuum. Managing how they are going to receive the news should take at least some thinking.

It is a blow to a lot of people – as someone described it to me, people grieve over their lost old age. Not just the patient but their carers too—the dream of a pleasant retirement on cruise ships and being an active grandparent take a massive blow—and the same is true for their partners/kids and for people who rely on them for income, strength, and other needs. It should be communicated carefully.

Income/Financials: The Elephant in the room. There is a huge financial cost that comes with PD. The cost of the treatment is very high and often unfunded (I am not talking about the medication but the physio, other treatments, diet changes, and many other costs) but the lost future income from early forced retirement and from the potential high cost of future healthcare support. It is massive—and it is the grim reality.

We are all in a different position and I can’t speak for anyone else. I am blessed to have a good career and thankfully make a decent living but when it hits you at 45, and for me my higher earning years are theoretically to next ten or so to come, and you haven’t got all the right insurances, etc. in place to the maximum funded level—it was and is a huge stress.

Even more brutally, many Young Onset Parkinson’s sufferers have jobs on which they are now not sure they can do to 100% of the level before, whether it is the stress of the job, the hours, the type. PD can massively influence this and my first 4.5 years of PD has seen that change significantly and I have had to make adjustments. This is another hundred subjects in and of itself—but it does need some thought about how and when to communicate it to others, so jumping out of the gate is not always the right strategy.

I am hugely grateful (understatement) to the way my work has reacted and responded and I know that not everyone (or in fact many, many people) have the same, so it needs some thinking.

A world of imperfect information – One of the other reasons people delay is often a lack of information. I hear people say – “I don’t know enough to know what to do and when.” People also have no idea the trajectory that the disease will follow. I did a fair amount of research on diagnosis and was able to speak to people. I formed an unscientific view that many people make it to year 5 in similar types of jobs to me (not at all scientific)…but the standard deviation/spread was huge from people who needed to make changes immediately to those few people everyone always cites who soldier on for 25 years. I have made it to nearly 5 but I have made big changes to my work and it has had very significant impacts on my abilities. The truth is simply that if I didn’t get the pump a few weeks ago, I think I would have had no choice but to stop pretty much now.

We all have imperfect information and the search for it is important and takes some time but the danger is it is a game of diminishing returns—the search for information can delay decisions that intuitively are clear. The bottom line, however—the simple reality is that keeping Parkinson’s hidden in the mid to long term is probably not sustainable for most people, and in my view, it is not good for people—you lose too many of the advantages above. Therefore it is a question of when and not a binary one of whether to or not.

My advice for what it is worth is threefold:

Control the process: Whether you tell people immediately or over a relatively short-term period during which you make some proactive steps regarding career etc., is for you to determine and think through and consult trusted loved ones on. It is not simple and the answer is usually specific but it should be you who controls this as opposed to PD forcing you to disclose.

A clear message: Set the tone and message clearly so it is clear to you, so that it is honest and heartfelt and that ideally conveys a message that conveys the seriousness of the disease but that it also sets out a message of resilience, determination, and a plan to invest in the road ahead—as opposed to one of panic, defeat, etc. This may take a little time to form in your head.

Seek advice: It is not easy to lean on people as no one is in your situation but there are people (like me) who may have seen something similar. It is worth seeking them out.

Get the flow right – You don’t need to tell everyone at the same time. It is your body and your decision and it is for you to control. Phase it as you think appropriate and ask people to respect your confidentiality but know that now everyone always does what you ask. Leaving long gaps between similar audiences may not be best but plan it as you see fit.

I don’t know whether you agree or disagree but it is an important topic that needs great care and there is too little information out there. I hope I have helped and I pray I have done no damage in the ideas I have set out.

Based on feedback and further thinking I reserve the right to adapt 🙂