In a nutshell :
If you haven’t got it you won’t get it
If you haven’t got it you can’t possibly know
What it feels like to be me
Everyone can ‘see motor symptoms coming’, ‘non motor symptoms are invisible’ they will suddenly jump out with no warning.
Most of the time you will be able to detect a ‘motor symptom’. So tremor, slow walking etc etc. You will be able to metaphorically duck.
If my tremor hits you round the face, that can be thought through rationally. My hand tremors due to PD and it went a bit ‘doollally’ and hit you round the face. I can then say sorry, make a little joke about it and move on.
If my non motor symptoms kick off because of their invisibility, ducking is not an option. You won’t know I have a non motor symptom kicking off until I have said the wrong thing or shown an odd emotion or cried or acted out of context or out of character.
With PD you learn what is important … and in certain parts of my day I am so happy, but in certain parts I feel so down. My days are compartmentalised by PD symptoms, drugs and so much more.
‘I try so so hard to be normal’ : To someone with PD they will understand what I mean
‘PD changed my whole perspective on life’
‘Life does not end with a PD diagnosis, it just gets more compicated’
‘Since PD I seem to spend my whole time explaining’
Explaining to Nurses and Consultants PD feelings and symptoms. Medication responses and side affects Everyone reacts differently to drugs, and differently each day
Why it is unpredictable
Why I am fine one minute and can’t do anything the next. Literally anything
Why some days are written off
Why some days are written off, then suddenly everything starts working and I am top of the world.
Why some days/moments/hours I am tip top.
Apathy, lack of motivation – it really is unexplainable unless you have these with PD.
It is important to be open and honest with your Neurologist- a tweak of medication can make a huge difference. However, if a change of med gets rid of the motor physical symptoms but then intensifies the non motor symptoms, the neurologist needs to know. He/She can test the motor symptoms to a certain extent. Unless your appointments always seem to be at a time when meds are working (mine do, my Neurologist has never seen me Off). The neurologist relies on you describing and not under playing or over exaggerating the symptoms, that is both motor and non motor.
‘Why I try and raise awareness’. To be honest raising awareness without moaning is really difficult. Awareness I think is important for fellow people with PD – awareness that they are not alone.
I write this blog honestly. Some posts may seem a bit vague and vacant, sometimes I try and say things and it all comes out wrong. That is because I don’t want to moan, I pride myself in information by stealth, with humour – sometimes I just want to say it how it is, but I really really don’t want sympathy.
Someone is diagnosed with PD every minute of every day.
After that PD rules my life every minute of every day. My life revolves around tablets, keeping meds topped up so that I can live my life.
Motor symptoms – physicality of PD
On days it is kicking off on the outside (motor symptoms), I feel I am holding friends back, I feel disabled and different to them. Everyone is lovely when they see someone struggling with a walking stick, and offers help. People can relate to this, they feels they know what it is like to not be able to walk (they don’t and I hope they never will). When they say, look it is just over there, when you are struggling to walk – when I cannot walk I cannot walk, but then suddenly I can.
Non Motor Symptoms
People don’t see them – they don’t understand and can’t possibly.
How does it feel to feel so claustrophobic you can’t stand even a hand on your shoulder
How does it feel to walk down the same hill to find the perspective has changed and you feel like you are falling
How does it mean for the meds not to work at all some days
What does it mean to be paranoid
What does it mean to be so up and down
How does it feel to shout at those closest to you … when you don’t mean it and don’t know why you do it.
and many more …
Obviously there are a couple of odes :
I am two people or is that three
Or half a dozen, just call me ‘we’
The one that you see, is actually me
Out and about, with and without PD
There’s me switched on when meds working well
I can almost forget about being unwell
I say ‘almost’ as it’s always there
Bubbling away, PD doesn’t really care
I do everything I can and wear myself out
I do things I enjoy, you would too I don’t doubt
People probably think ‘hark at you;
With your disease, look at the things that you do
Karaoke, dance, and staying up late
Drinking gin, laughing and chatting with mates
I do things now I don’t hang about
As I know PD will stop me in my tracks, and give me a clout
If the bottom is rock, then I have further to go
I don’t understand and I really don’t know
What to do about this disease, which drives me mad
And the medication, 33 tablets is quite bad
Or should I say ‘ain’t arf bad’ wth a jaunty smile
And a click of the heels, everything was good for a while
My brain is addled, sometimes it’s blocked
I don’t know why, I have thought about it a lot
Sometimes my mind is clear – I have clarity as well
Sometimes I forget for a few minutes about being unwell
Then a few symptoms start to rise
And my enthusiasm and happiness begin their demise
Invisible symptoms are the worst
Why why can’t people understand ….
The night is the worst, it is so bad
Sometimes I feel like I am going mad
Shuffling oddly, and then I’ll probably stop
As more and more depleted my medication got
Then I drop off to sleep with no warning during the day
And ramble and type words which I do not say
All of these words are not said with thought
I upset people when I say more than i ought
I really don’t know, I really can’t say
I just want this feeling to go away
If you have 5 minutes, Kathleen Kiddo is a person with PD, and is an amazing writer and is incredibly eloquent. Find her on Facebook – she takes words out my mouth and says them so much better.
Re-reading this I don’t know whether I should post or not … I will and hope it makes sense …