I would be interested to know if anyone else has experienced the following miraculous (but temporary) recovery of the capacity to walk.
After 8 years, I am now on a high dose of L-Dopa, taken four times a day, together with Ropinirole. The dopamine gives me up to a four hour window of freedom to move around almost normally. With careful management of my day (when and what to eat, when to take my daytime naps, avoiding too much alcohol and timely medication) it is possible to avoid getting extreme freezing or getting too frustrated.
When outside one of these L-Dopa medicated windows, walking and any other coordinated movement is severely impeded. Except that on about ten occasions now, somehow the ability to walk returns unexpectedly. It usually happens in the mornings when I have taken no dopamine for about 12 hours and have spent the first few hours of the day shuffling around holding on to things. All of a sudden, I can walk, easily, at any speed, as if I don’t have Parkinson’s. I can dance, carry things, in fact do the same things as if I had taken a dose of medication in the last hour, which I definitely hadn’t.
The only possible trigger that I have noticed is that I have recently eaten something and so presumably my blood sugar is on the rise. Is this strange or something other have experienced?
It’s hard to consciously recreate these episodes but it would be nice to be able to understand what’s going on and harness for improved management of my day.
Your thoughts and experiences would be very much appreciated.
I have no explanation to offer, but so enjoyed reading about your ‘bonus’ moments. As you say, it would be marvellous to be able to harness the process as a factor for how you manage your day.
You sound as though you have established a great routine anyway, which can only be of benefit. Let’s hope these mini-miracles continue.
Up until two years ago, then aged 68, I was able to ride a horse! This was liberating - another creature taking away the chore of walking. I thought it was then prudent to stop, but I so miss it.
When I read AndrewR’s entry on The evils of sugar and the way in which it stimulates serotonin, I thought that must be the explanation. However, following another ‘emancipation’, blood sugar is no longer the front runner for an explanation.
After waking at 6 ish and staggering around for a bit, then sitting at my desk for 90 minute, I shuffled to the garage and my rowing machine. Ten minutes moderate intensity rowing may have been the trigger but for a whole hour I was released from the shackles of Parkinson’s.
Unmedicated, I could carry two heavy bags of rubbish 100metres to the bin store. I then hung out he washing which is normally quite a challenge, followed by some pruning in the garden and other domestic chores.
A whole hour of freedom fuelled by my own dopamine!
Having experienced several more spontaneous periods of unmedicated freedom from Parkinson’s, I’m still very curious to know if anyone else experiences these mini-miracles.
Most often in the morning and most often after moderate exercise, I’m suddenly returned to my pre-Parkinson’s state. Complete freedom of movement for about an hour. No medication involved.
I’m wondering if it’s something to do with mood, feeling relaxed, stress-free and content.
Hi Paul, sorry for the delayed response. this is the first time that I’ve looked at the forum for weeks.
Well how extraordinary! i’ve never heard of an experience like yours, but it does remind me of a couple of phenomena I’ve read about. One is when PD sufferers act out their dreams (REM sleep disorder). I’ve read that they will often move as if they did not have PD, but as they are moving in their dream in which they do not have PD. Sorry but I can’t remember where I read that. The second similarity is described in a book I’m reading right now ; ‘Mentored by a Madman’ by AJ Lees, who is an eminent neurologist. The book is a rather eccentric memoir. He describes how some victims of the 1918 sleeping sickness, who were catatonic most of the time, would come alive again for a brief period, in response to specific stimuli. For example, one who had been a footballer would react to being kicked a ball and dribble it skilfully round the ward.
Hi Jane, Thank you for your thoughts. I am still experiencing these periods, including this morning whilst doing my extra-early morning chores! The only thing I can add is that it follows a positive pattern of thought, That is my mind has followed a train of thought that has left me in a very positive mood and that triggers a sense of relaxation, allowing complete freedom of movement.
Enjoyable visits to old friends and family is a frequent trigger for these episodes.
I shall stop using the word miracle, in case people think I am deluded in believing there’s a cure. Or that I am dreaming these events!
Hi Paul, I have missed the window on this topic but I have found unmedicated improvements. If I walk at 5.30 as soon as I wake up I can get about an hour of relatively normal walking. Equally I like the coming off the meds feeling I get in the evening which when the meds have worn off I can also walk normally. I experimented a bit and found that if I went walking at the end of a dose I could walk out my problems with walking.also very strangely if I am having problems walking if I break into a trot it’s barely running) my movement improves. I put this all down to my body producing it’s own dopamine but can’t replicate it to produce an effective strategy. If I try to force withdrawal to kickstart my own dopamine my brain turns to jelly.
Hi Rob,
That is very interesting. I also find unmedicated movement is generally better in the morning, assuming at least a few hours sleep are achieved, And yes, when caught in the intermediate state, running is easy, walking is difficult and the slower the walking the harder it is. I put this down to the fact that running requires less conscious input, that is, the autonomic systems take over.
Generally though I don’t like walking and try to get on my bike as much as I can. For me cycling offers such freedom of mind and body! I think cycling requires such simple movements, compared to walking and has a momentum that helps to keep things naturally moving.
I have also failed trick the brain by the means you describe!
