Some of you may be thinking what this blog lacks is a car chase. I am sorry to disappoint, but the title doesn’t refer to a Capri and C5 drag race, but to movement (motor) and non movement (non motor) symptoms.
I’m afraid I can’t guarantee that this post won’t contain another analogy. I am actually enjoying the challenge of making a subject, which is extremely complicated, into something which hopefully people can relate to. As I said at the beginning I want to raise awareness and understanding.
Sorry, on with the blog …
This blog would probably not get past the pilot stage if I just wrote : ‘got up, had a ‘so so’/’rubbish’/’marvellous’* day, then went to bed (*delete as applicable)’, and a photograph of my dinner.
Actually I am going to digress (again) for a moment. Dinner is a way of non scientifically judging how much PD has interfered with my day.
Imagine it is a Wednesday, the family arrive home and through the power of kitchen table/oven observation, they can deduce how PD has affected my day.
- Roast dinner with Yorkshire puddings (tip top day as I would have gone out, bought a joint of meat, peeled vegetables and multi tasked to prepared a ‘mid week roast’).
- Stew in slow cooker (had a good morning, I got organised and put dinner on first thing).
- Pasta (dexterity rubbish, no vegetable peeling, quick pasta meal).
- Nothing (not good at all).
This is obviously not set in stone. If there is no dinner, am I really PD rubbish, or have I been throwing some (slightly misshapen) shapes in a nightclub all day? (Or have I been writing my blog all day!)
Sorry, back to motor and non motor symptoms …
Below are the main symptoms I experience at the moment, there are lots more.
- Motor – I have already shown, with a few analogies, how depleted dopamine affects my brain to body messages and causes movement problems, at the moment my top four are : Rigidity, Stiffness, Dexterity, Tremor.
- Non motor – There is another group of, predominantly, ‘invisible’ symptoms. They are generally the non motor symptoms. My current top four are : Anxiety, Apathy, Constipation, Sleep problems.
These are equally debilitating. However, I don’t think you will want or need analogies for this list.
Dopamine is also an endorphin which affects mood. So often when my meds switch off, I can suddenly become tearful and anxious.
STRESS is in capitals for a reason, it is a disaster for PD. It is a huge factor in making symptoms break through.
These terms will never be ascribed to me :
- ‘Like a duck on water’
- ‘Cool as a cucumber’
More likely to be :
- ‘Like a giraffe in a tumble dryer’
- ‘Tepid as a stew’
So I think I will give poker a miss, I like my house too much to lose it.
Stress can make PD symptoms remerge in an instant without me actually consciously doing anything. Moments of often unavoidable extreme stress can actually bring about some frightening symptoms which have only, fortunately so far, lasted a relatively short amount of time. This has made me realise that managing stress is a top top priority.
For example in addition to my ‘usual’ symptoms going haywire, my face started contorting weirdly, mood crashed, and new rigidly in my right hand and foot – scary stuff.
Conversely, happiness and positivity combats stress and can help my symptoms recede. So I have learnt that, although difficult to do when symptoms are kicking off, if I can dance, listen to music, laugh and feel positive then things can gradually come back under some kind of control.
It is difficult to avoid stress, but I am looking at ways of managing it through meditation, relaxation, mindfulness and positivity.
In summary : PD is twaddle* (*insert expletive)
In the same way the motor symptoms happen, the non motor symptoms happen without me doing anything. The lack of control over what PD does is often quite overwhelming. That is why I try everything I can to get back some control through finding ways of managing the condition (and I have found a few ways which I will be posting about very soon).
So when I suggested that dopamine is the elixir of life, I wasn’t exaggerating. It affects my physical, emotional and mental wellbeing.
My brain and body are still playing the game of Chinese Whispers, which the medical professionals say would have probably started 10 years being diagnosis. More symptoms will continue to appear at varying rates, at the moment the motor symptoms are mainly in my left side, but they will spread.
I did say 10 years before diagnosis. I will have only noticed the symptoms when the nudges got harder and ‘annoyingly UNignorable’, and probably by then I will have lost 80%of my dopamine. This is one of the reasons why a cure is difficult to find because they don’t know when or why it starts.
Just to reiterate, I am not writing a text book. This is my understanding of what PD is through the way it affects me. Others living with PD may read some of this and think, ‘she’s got that wrong’, that’s because everyone’s experience of PD is different.