This seems to be my default look. I remember the comments of my latin teacher years ago. For most of my first year with him he thought I didn’t understand then was surprised at my good marks in the end of year exam.
With Parkinson’s your face can become less expressive and people can make assumptions. Look a bit confused if so life can act as a confusion multiplier and make it worse. I went to the cinema recently and just before the film I took a comfort break and as I returned to the film I must have looked puzzled, because as I tried to re-enter the film the attendant stopped me and said I was going back to the wrong screen. Confused I tried to reply but all I managed to say was “Murder” and luckily she realised that was me trying to tell her which film I was seeing and not a threat. She apologised and I continued along to the right film
So why did I mention this? Well we all judge by appearance. Our brains are trained to make assumptions so we don’t try to assess everything, Our brains put things in groups so we recognise generic information. It is pretty automatic and it can be hard to get away from preconceptions. If nothing else misunderstandings can be a learning opportunity. So have faith changing mindsets can be a slow process but it is worthwhile.
A short blog this time so here is a recent facebook posting of mine to flesh it out a bit.
A new craze is sweeping the nation its called Xmas present Treasure Hunt. Anyone can play just order something on line and see if it turns up.You too can come home to an email saying it has been delivered and Guess what- Oh no it hasn’t but they tell you Oh yes it has- It is pantomime season. So you check around the outside of the house ask the neighbours. Then you decide to email a friend or a friendly customer service rep at the parcel compay for a round of you signed for it- you already know how this goes-Oh yes you did , Oh no I didn’t -as they show you a strange signature that almost looks like No 10 but I live at number 202. After failing to work out the clue you wait until the next day and hey presto outside your backdoor is your own parcel. They have crushed your box-cue Kenneth Williams OOoooh Matron but thankfully its contents are undamaged, Probably an inappropriate attempt at using the catflap So watchout because you too may get to play Xmas present treasure hunt.
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t’s a good life being a cat you can sleep when you want, where you want how you want. With Parkinson’s not so simple. Daytime tiredness due to meds, not sleeping at night due to Parkinson’s combined with fatigue and you have Parkinson’s unholy trinity. You too can be a daytime zombie but without the immortality(thankfully also without the biting}.
I have been there done that and slept in the Tshirt. There seems like there is nothing you can do and in the daytime at work you snooze you do lose. You lose trust and respect and nobody understands the strength of mind it takes to be that tired and be there. Nobody understands what is like to spend a whole meeting keeping yourself awake despite being continuously on the cusp of sleep. Again I have been there and done that.
Something has changed I am sleeping better at night and am less tired in the day. Not sorted yet but I think it can still get better. What changed? I changed my meds. I decided what I wanted and went for it. Yes I did obtain agreement from my consultant. It took ages and the main reason was poor co-ordination between the different roles involved in my medical care. However the silverlining was the availability of a new drug Opicapone which boosts the performance of the Cobeneldopa. This has so far eliminated my off time. My medication gives me the support I need but the situation is more complex in that the sleep helps the medication work better.
So life is now less a battle but also I am more aware of how I was struggling. Not having a partner, I had no one who could give me a heads up. I would urge all of you with a partner to use their feedback to understand the status of their condition.
Next I need to increase my activity and exercise. Tonight whilst watching Simon Pegg in Run Fat Boy Run I performed Cycle Fat Boy Cycle. So I am making a start but that is something I will cover in a future blog.
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We have reached Halloween again but I carved my pumpkin little too early and it hasn’t quite made it .It has been quite a week though. Thankfully I have avoided the nefarious plot of buses to run me over. This came to light when a second friend warned me I could get run over by a bus it seems too much of a coincidence.Last Thursday I visited the cinema to see the snowman. Not the Raymond Briggs happy Xmas film but the Jo Nesbo serial killer story. Not as good as the book but Michael Fassbender is great in the lead role and well worth a look if it is your type of thing.On Saturday I took the train to Falmouth and booked into a Pub for bed and breakfast. I wandered about taking some photographs before heading to a nearby hotel for a Wedding Reception for the marriage of two of my friends and colleagues. A beautiful evening with old friends and colleagues as well as the happy couple.After the reception I walked with tired legs for about a mile and a half to my accommodation. An interesting walk as Falmouth a small town but with a University emptied its nightclubs of costumed revellers enjoying the proximity of Halloween. Some lively and others the worse for wear but all good natured.
Today I said goodbye to a colleague retiring after thirty six years. The end of an era for one as others start the married happiness of the rest of their lives. This blog is about Halloween but also about life. Life involves highlights sometimes ours sometimes other peoples. I sometimes wonder if I will have another relationship. I was captioning the photo “Beauty and the Be(a)st”. I don’t like the way I look at the moment in two ways my stomach seems to be trying to grow large enough to live as a separate entity and my expression can be lacking awareness. I know that some differences are visible, shown by peoples consideration, standing so I may sit, checking how I am. Sometimes I would like to be able to disguise Parkinsons more but that is difficult when my posture is also changed. I also wonder how many years do I have before I retire.Then I remember none of us have any answers. No answers but we have talents and things to offer If I can only see the negatives how will anyone see past them. Like Halloween when we open doors there could be surprise tricks or treats but that is life. Whatever life holds, I want my share.