Fatigue

Saturday 3 June 2017

When I tell people I have Parkinson’s I get one of two reactions: a blank stare or a semi-blank stare coupled with some heartfelt sympathy.

Both reactions are completely understandable.  Only 1 in 500 people suffer from the disease and they are nearly all over 60 years old, so I normally have to quickly explain what it means.

For those who maybe had an uncle or a grandparent who suffered from Parkinson’s with its crippling and depressing effects in old age, there is of course sympathy but also some puzzlement as to why I seem so normal.

Young onset Parkinson’s, normally defined as having the disease under the age of 50, affects about 1 in 5,000 people.  In other words about 10% of Parkinson’s cases are young onset.  The progression of the disease is typically (though not always) slower in young onset cases, and sometimes with slightly different symptoms.  Dementia and other cognitive impairments are, thankfully, less common than in later onset.

So for example I get occasional tremors in my right hand but these are mostly suppressed by my medication.  I can sense the early stages of mobility difficulties but for day to day purposes can still walk and function normally.  I have constant stiffness in my right hand, arm and shoulder but that is not immediately obvious to observers.

In fact, by far the biggest day to day challenge I have is an invisible one: fatigue.

Fatigue is more than just feeling a bit tired.  It’s a persistent lack of energy and nearly constant desire for rest.  It ebbs and flows but, bit by bit, it is starting to pervade much of my life.

Getting through the work days is tough though still manageable, but I seem to have energy to do little else these days other than go to the office and rest at the weekends.  Recently I’ve taken to having afternoon naps on Saturdays and/or Sundays… so lovely!  I force myself to exercise and spend time doing things with the family but, honestly, mostly what I want to do is just laze around.

I scour Parkinson’s websites and chat forums for information and anecdotes.  It seems unclear whether it’s the underlying condition that is responsible for the fatigue, or the medication (probably a bit of both) but, what is clear, is that many people have the same problem, and it only gets worse.

It seems to me that the main reason many young onset sufferers struggle at work and ultimately end up stopping work is not mobility problems or depression, it’s simply the chronic fatigue.  There appears to be no silver bullet: no special medication or dietary adjustment.  No amount of caffeine can compensate for it.

I look at my mortgage statement and see that it still has a decade left to run.  I feel certain that the fatigue will get the better of me long before then…