Parkinson's has become one of the leading causes of disability worldwide. And I can totally see why. However, getting diagnosed when you are young makes this a little different. And most of the people I know with PD still work. It is almost more important to me than anything right now to keep working for as long as I can. I was offered my dream job around the same time as I was diagnosed. It all felt quite surreal, as I felt so incredibly bad right before diagnosis and before starting meds. I could not see myself working for very much longer, and it freaked me out. I work in an office job as an Executive Assistant. At the time of diagnosis, I could hardly type. I was fatigued, worried, and struggled with focus and concentration. This all changed when I started medication. Unfortunately, though, this is a progressive disease that only gets worse, so it is hard to predict the future, and at times it can be hard to picture myself still working in 5-10 years.
But no one can predict the future, so you must make the most of every day and take one day at a time. And of course, the ability to work with PD depends a lot on what kind of job you have. I am lucky to work in a very accommodating environment with a lot of flexibility. My job can be done from anywhere as long as I have internet access. I try to time my meds to perform at my best during working hours, but that means I can be fatigued by the end of the day with very little energy for my family in the evening. I still believe that staying in my job and being successful will benefit my family and me in the long run. But finding the right balance can be hard at times.
My tasks are very varied and no day is the same. I have a lot going on at once, and keeping track of everything is harder than it used to be. It doesn't mean it's impossible, it just means that some things may take longer, and I must work harder to do the same job. The brain works a little differently and can get more easily overwhelmed by too much information at once. But at the same time, challenging oneself and keeping busy stimulates the brain to stay healthy for longer.
Fellow "parky" Eric Slominski posted a poem that I thought sums it up in an excellent way:
Early rising
Start off exercising,
Then, time to go pay those bills.
Wife wishes me a “great day”
I don’t know quite what to say…
So, I just swallow my big handful of pills.
Meds not quite working
legs are still jerking
when I get to my job.
Coworkers take it in stride.
I go away and hide.
But do they think I’m some kind of snob?
Toes tapping,
feel like napping,
dyskinesias starting to show.
Trying to speak,
But I feel SO weak
and bradykinesia is making me slow.
Eventually my body starts working
no longer hiding and lurking
it’s time to get things done!
NOW is the time for that meeting!
Hurry, “on- times” are fleeting!
So energized, I practically run!
But sooner or later, (usually more sooner than late)
No matter how diligently I medicate,
my energy levels will wane.
Walking gets choppy,
talking gets sloppy
my body begins to complain.
Inconsistencies, at times amusing
maddeningly confusing,
create quite the stipulation
for the conditions of my employment
are not just for my enjoyment
Do I already need Deep Brain Stimulation (DBS)?
On the way home,
feel alone.
These symptoms get tiring to explain.
Family needs a dad,
but I spent all the energy I had,
do I deserve to feel this shame?
On the couch,
why such a grouch?
Damn you Parkinson’s!
If people only had insight,
into how everything is such a fight,
they’d say:
“People with Parkinson’s must be a champions,
just to make it through the day!”
1: Dyskinesias – uncontrolled involuntary muscle movement 2: bradykinesia – slowness of movement. One of the cardinal symptoms of Parkinson’s 3: on-times – when medications are working well to control symptoms 4: Deep Brain Stimulation (DBS) – neurosurgical procedure that uses implanted electrodes and electrical stimulation to treat movement disorders. I think this is brilliant. It is so relatable to so many. This is exactly how it feels. You get on-time, where you feel almost normal and can get lots of work done. Then when you are off everything slows down, and it's hard to concentrate. It's hard to stay motivated. Fluctuating like this means you have to plan your day well. I try to do the most challenging tasks when my meds peak, and then some more mundane tasks when I wait for my next dose to kick in. Unfortunately, this is not always possible, and at those times I feel lucky to work in such a safe environment with really great understanding colleagues.
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