The not so small print :
Warning : This blog has the potential to unlock unacceptable sympathy.
Strictly no :
- Arm touching
- Head tilting
- Diving
- Petting
Another day, another gameshow.
- ‘What you see is what you get’
- ‘First impressions count’
- ‘Mirrors never lie’
- ‘The camera never lies’
PD redefines all these phrases.
- ‘What you see is what you get’
- Obviously, if I am being pursued by a sabre toothed tiger you can probably assume that the panic on the outside is continuing on the inside.
- However, if you see me answering survey questions in the high street about the price of hummus, and I’m shaking with a stern, cross face. Please don’t assume I am a rude, hummus phobe.
- ‘Mirrors never lie’
- I caught sight of a grumpy looking woman walking past a shop window.
- It genuinely caught me off guard.
- Especially when I realised the grumpy looking woman was me.
- Now bearing in mind I am ‘me’ and I knew I was happy, calm and relaxed, I was genuinely shocked by the grumpy, unapproachable look on my face.
- This was a couple of months before I was diagnosed.
- ‘First impressions count’
- I went for an interview.
- I spent the interview trying to hide my tremoring hand.
- I didn’t get the job.
- The feedback was I came across as very nervous.
- Which I did, as I didn’t tell her about the PD.
- This was when I was first diagnosed. Today I would have told the interviewer straight away (and probably given her the link to my blog).
- ‘The camera never lies’
- When a photograph is taken, I am worried about how my smile is going to turn out.
- It usually looks a bit wonkily odd to me.
- I am smiling evenly on the inside.
- This was just scarily odd :
- I was sitting on my own, just sitting.
- I heard an odd noise, got a bit scared as I was the only person in the room.
- I thought it was a mouse.
- Then I realised it was me.
- It was my arm tremoring, rubbing against the chair.
Actually, in PD terms all of these statements could equally be true. So if motor symptoms are under control, then my calm sophistication will radiate from the inside to the outside.
I can actually have some insight into the mixed messages that I give out, as in two of the examples I have confused myself. As I mentioned ‘I am me’.
I have written about how PD affects my whole body movement, through tremor, bad walking, etc, but not about facial expression. These to be honest, at the moment, I find most distressing.
So although I could easily write another 1,000 word narrative about how PD affects my face, I thought you deserved a break for good behaviour. Bullet points will suffice. (Hopefully not all of these at once – that would be a sight)
- Face muscles become stiff (blank expression)
- Face contorts with dystonia (think unintentional ’70s gurning competition)
- Voice goes quiet and whispery as it affects vocal chords
- Face muscles twitch
- Staring eyes
- Multiple blinking
- Looking grumpy
- Small facial nuances difficult, a cheeky wink doesn’t happen
- Nodding in acknowledgement difficult
I have been accused of being :
- Scared
- Cross
- Stressed
- Worried
- Cold
- Drunk
- Injured
- Needing the toilet urgently
(but not all at once)
Of course, you may bump into a rude, cross person in the queue for the loo in Casualty wearing shorts and a t-shirt in mid November. This is not me.
When I was first diagnosed I would sit on my hand to disguise the tremor, I would look at the ground embarrassed to make eye contact. I was worried that people would think I was incapable if I told them about the PD.
But now I realise this was down to lack of awareness on my part.
So now, you may have noticed, I believe that communication is key. Breaking the ice with a quip about the symptoms means that I can relax a bit more, and makes me less anxious. Even if it sometimes confuses the person I have just announced to that I have a disease.
So now I probably mention it too much. For example.
- I was trying on some shoes and was fiddling with laces. I became very aware that I thought I was lacing oddly (however that might be?!) So I said to the shop assistant randomly ‘I have Parkinson’s’. The poor person jumped and said ‘I haven’t heard of that brand’. I replied curtly ‘It’s a disease!’. My daughter embarrassedly suggested we leave the shop.
- When I sit in the theatre/cinema I try and ensure I am sitting next to someone I know on my tremor side. Otherwise I usually turn to the stranger next to me and tell them about the tremor – again they often look confused. They may inch a bit further away from me as they are now sitting next to an over familiar lady who has a ‘disease’ for the next two hours*
* Actually this is important. If I knew how to use the extra facilities on this blog I would do this bit in an interesting bold flashing font. Obviously not comic sans (far too jokey), but maybe helvetica. However you will have to make do with capitals.
IT IS NOT CONTAGIOUS
You can now stop virtually hand sanitising after every blog view.
I am very aware of my symptoms and actually, it may surprise you, that (maybe) I have become a bit self obsessed (you are only reading it, feel sorry for those living with me). Apparently everyone is wrapped up in their own odd bits and pieces, and so apparently it is quite likely that they won’t notice the tremor, unless I hit them with it.
So think about this, on first impressions, erasing (briefly) all your new found knowledge about PD, would you pick someone looking nervous, cross and unapproachable as a :
- Prospective employee
- Running buddy
- Tennis partner
- Piano player at your wedding
- Your friend
(actually I am capable of all of the above apart from piano player at your wedding, unless you just want grade 1 pieces)
I have found this blog a bit difficult to write. I have had a few face ‘bits and pieces’ over the years, but nothing major. However, just recently I have had a couple of very upsetting times when my face has gone into complete spasm. I have been quite panicky and upset.
I was panicky about the walking problems when this symptom first reared its head. But now I have figured out some coping strategies, I am not so stressed.
I need to do the same about the ‘face thing’ (including, learning the medical term). I need to learn coping strategies and try not to let it drag me down.
Easier said then done.
Parkinson’s is (insert expletive)
A couple of random odes :
An oddly factual ode (which will test your head tilting/arm touching – sorry)
- On the periphery
- Yet still in the room
- On the outside
- Filled with gloom
- Please don’t avoid, don’t assume
- Do please, just cross the room
A (slightly rushed) (slightly humorous) ode (to leave you on a maybe confused, but happy note)
- I was born to dance
- And if given half a chance
- I’ll shake my bootie
- Whilst eating tuttie frutties
- Sorry rhymes are deserting me
- I think I need some chocolate
