The fact is when you are single
Parkinson's is not the same disease
We need to be in the mix. We're not.
So will you share this poem, please?
Back in the dark ages,
When I was diagnosed with PD
There was no social media, no webcasts
(Yes, there were computers and TV!)
To learn about Parkinson’s disease
We went to conferences for education
Where real live people were brought together
Often by the Parkinson’s Disease Foundation.
Most every presenter
Polled the audience to see
Of those attending,
How many had PD?
I would raise my right hand
(My left one would not pay attention)
Put it down, ready to raise it again
Anticipating the next question.
"Those of you here today
Who take care of a loved one with PD,
Please raise your hands up high.
Awesome, now I'll tell you a little about me.”
I would raise my hand for both
I am a patient and my own caregiver, too
No one ever discusses how we will manage
Like, what if we got the Coronavirus flu?
Parkinsons patients managing PD & life on their own
Are more anxious, understandably so
We have to rely on an unreliable body
Every where we go.
Think about how your life would change
Without the help you get every day
Simple perks you may take for granted, exhaust us
Whatever we take out, no one else ever puts away.
No one else makes meals or beds,
No one hears or helps us if we fall
No one to assure us we will be okay
If we hit the wall.
No one we can talk to each day
Our voices get extra weak
So when we get on the phone
We can barely speak.
We have no one to accompany us
To our endless doctor visits
No one to validate for us
The small animal in the corner is fictitious.
No one objective
To track our decline
No one who knows
What we were like at baseline.
No one to help us reach way up high
To get what we are after.
Small tasks like that, gone wrong for us
Can end up in disaster.
It is dangerous to live alone.
We would not know if our house reeks.
We could be living with toxic fumes
I've lived for days with a gas leak.
No one to help us make an exit
Fatigued and needing to go back
Meds off, freezing alone in public
Results in a massive panic attack.
We have the same challenges as others
But our thoughts have an added layer
Thinking how hard a particular symptom is now
Worrying about how we will manage it later.
We are at higher risk
For life to prematurely end.
Last year it hit close to home
When I lost my best PD friend.
The problems we have are left out
Of virtually every conversation
Especially when strategies are given
At the end of webcasts and presentations.
Maybe there are no solutions
To the conundrum we are in.
Including us in the conversation
Is a good place to begin.
If you work with PD patients
Please don't make the assumption
We all have someone in our lives,
The Caregiver Presumption.