Living with Parkinsons poses lots of riddles though. Why does it affect movement on my right side so much more than my left? Why is it worse on some days than others? I encountered what is, to me, the most intriguing puzzle one morning not long after diagnosis. I was sat up in bed looking accusingly at my right hand immediately after waking up. I flexed my fingers in a sort of air strum and, to my surprise, my hand responded without any of the stiffness that I had become accustomed to. This felt like a spark of hope after a pretty bleak few months. After five or ten minutes the slowness seeped back in.
I asked my neurologist about it at my next appointment. "It's called sleep benefit," he said, "but actually, as the disease progresses, you will start to feel worse first thing in the morning." He is careful to manage my expectations of Parkinsons. Another time when I asked about improved treatments he answered that there was nothing on the horizon.
'Sleep benefit' then. A bit of a half hearted name for a medical phenomenon to be honest. Since that appointment I've noticed that I also get the effect when I wake from a doze in front of the TV. In fact it is often more pronounced and longer lasting. I routinely sleep through whatever I've chosen to watch but the time after I've woken feels like a kind of magic. I feel like my old self for a while and I stay up for hours doing nothing in particular to prolong the experience. I get to bed around 2 a.m. which of course means that the next evening I will be too tired to stay awake when I sit down to watch the television.
Googling doesn't reveal much further. There are several scientific papers that describe sleep benefit as mysterious and enigmatic. A very quick scan of these tells me that not everyone (around a third) who has Parkinsons experiences this temporary respite from symptoms and that the condition is poorly defined and understood. There also seems to be some doubt about whether it is a genuine thing.
In the interests of science I made two videos of my air strum:
The first video was taken about ten minutes after waking up just before I got in the shower. At this point I haven't taken any meds but I'm wearing Rotigotine patches that are near the end of their 24 hour duration. I can reassure you here that the video doesn't get too racy - its just my hand. You can see that i'm never going to be Jimi Hendrix but the movement is reasonably good although it tails off at the end.
The next video was taken five or ten minutes later after I had showered. Again there's no nudity other than my hand. If anything this video is cleaner. The movement has slowed down and the co-ordination is gone.
So what is happening? Perhaps sleep has replenished my reservoir of dopamine which gets used up after 5-10 minutes. Maybe but this doesn't explain why I get the same or greater effect after a short sleep in the evening.
Until I hear evidence to the contrary I will cling to the belief that sleep benefit indicates that somewhere beneath the fog of Parkinsons, the person that I used to be still exists waiting to be freed.
Papers
The related factors of sleep benefit in Parkinson’s disease: A systematic review and meta-analysis
I was always told sleep is beneficial. I have a little nap in the afternoon and it certainly recharges my batteries. I sleep well at night but thats due to night meds which are slow release. As for feeling good one day and rubbish the next, that is down to what you do that day. If you over do it! then your pay for it the next. Good place to read about things is parkinsons.me
ReplyDeleteThanks Linda, I haven't checked parkinsons.me. I will rectify that now and add it to the links page.
DeleteHi Matt,
ReplyDeleteI’m the exact same !
I feel “normal” for possibly 10 - 15 minutes, then Mr P decides to wake up and scupper me !
It's strange isn't it? A good feeling but strange that it's so fleeting.
Delete