The most annoying symptom?

Communication is incredibly important for us humans. It is what ultimately allows us to work together to achieve great things.  More than that, good communication is important for our own well-being.  Basically, to be understood feels good.  In many people with Parkinson’s communication is difficult.   I read Facebook posts all the time of fellow Parkies complaining that their thoughts don’t quite make it to their mouths.  They cannot find the right words, their thoughts get jumbled, they slow down and can’t quite make the connections they normally would.   I can commiserate.  As a man with PD trying to be an effective employee at work, communication problems due to Pd can be frustrating…and occasionally embarrassing.  I strive to be a good communicator; I really do work at it.  But Parkinson’s can still at times make it challenging.

As time has passed since being diagnosed with Parkinson’s I have improved in so many ways.  I generally move better and feel better.  Moreover, I have mostly gotten over any shame when my motor symptoms such as shuffling, are on full display.  With these improvements, I have been able to step back into key roles at work, where communication, is especially important.  But as I have gradually taken on these roles, my communication problems due to Parkinson’s have occasionally been a hinderance.  It seems like many other Parkinson’s symptoms it can strike seemingly out of nowhere.   Communication problems in Pd are sometimes subtle, sometimes not so subtle.  From fellow people with Parkinson’s, I have heard it described as a brain fog that can make it difficult to focus, or a mental fatigue.  For me, it can be as subtle as having difficulty finding the right words to an intense fatigue, to a kind of distractedness that can make it difficult to stay tuned in to what is going on around me. My mouth can at times feel gummy and difficult to control, making it hard to articulate words.   It can be difficult to speak up.  At times it can be difficult to speak at all.   To listeners, I believe it is often manifested as slurred and/or slow speech.  Often it includes a quiet monotone voice.  Once it strikes, usually the only remedy is time and rest. 

It takes energy to effectively communicate.  I have found that for me, Parkinson’s puts a hard limit on how much energy I have.   Once I run out, my symptoms become more difficult to suppress.  Everything I do from walking to talking exacts a toll on my energy level.  Different activities take different amounts of energy for me to perform.  Activities such as thinking or writing generally do not take much energy.  Walking takes more energy and I generally try to limit how much I walk at work.  Perhaps because I am an introvert, simply being around people puts a drain on my energy level.  Talking to people is an even greater energy drain.  I try to carefully budget my time and energy throughout the day so that I do not run out.  I try to put the most energy into the important tasks and ignore everything else.  If I run out of energy everything becomes difficult to impossible, including things that do not take much energy to do, such as thinking or writing.  This “energy budget” concept is a bit of an over-simplification as symptoms can and do surface at just about any time, but it does at least offer some predictability.  By budgeting my time, I have some control.

The reduction in effectiveness these communication issues can have in the workplace are obvious.  They can also be detrimental to the perplexed person with Parkinson’s afflicted with these problems.   As you might imagine, the experience of going one minute sharp as ever, firing on all cylinders to having trouble articulating the most basic concept is frustrating and sometimes embarrassing.  It can be very deflating to work so hard on something, only to fail to accurately represent your work.  This can destroy one’s motivation.  It can annihilate one’s confidence.  It can leave you with a feeling of being chronically mis-understood.  Over the long term, this can be hard on one’s mental health. 

Am I limited by this difficulty communicating?  Well, yes somewhat BUT…by taking a proactive approach and judicious use of perspective, I can limit the problems I have with communication difficulties.  For starters I closely monitor my energy levels.  If I feel them start to wane, I might take a short break or have a snack.   Eating well and staying hydrated are important parts of managing all Parkinson’s symptoms, and speaking difficulties are no exception to that rule.   Of course, staying on top of my medication schedule is also important.  It is not worth trying to save time by delaying a dose if that means that I cannot function later.  Though I, like many people with Parkinson’s struggle to get a good night’s sleep, getting enough rest is also a critical component of keeping symptoms, including communication difficulties, at bay.  Getting plenty of exercise too, is one of the best ways to manage symptoms.  I, like many Parkies exercise regularly to get as much benefit as possible.  I try to schedule meetings for the morning as there is a better chance my body will be functioning properly before lunch. At times though, despite everything I do to prevent them, I still have Parkinson’s symptoms that make communication challenging.  This is where, if I can, I have learned to be upfront with my co-workers.  I will let them know what is going on and take a break.  It is rare that it cannot wait for a 20-30 minutes, and often that is all it takes.  In the odd event that it is urgent, and it truly cannot wait…well…I will try to be as concise as possible.  If I am having problems speaking up, I will try to be as loud as I can without sounding unnatural.  I will often try to gracefully back out of the discussion as quickly as I can so I can follow up later when I am feeling better.  I do have particularly difficult days where I just cannot seem to get my mouth to cooperate.  On those days I just try to have good perspective.  I will find something to be grateful for and just try to focus on that.  I never have trouble finding something to be grateful for, as I am truly blessed in so many ways.  All in all, by taking careful measures I have found that I have been able to be successful in the workplace despite communication challenges. 

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