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.
Thanks for reading