This is just a theory but it seems to fit in with what I experience and also with the results of the trial we did on Broccoli seed extract. The broccoli extract study pointed directly to sulforaphane affecting symptoms strongly related to energy production. This means that the physical targets being affected were mitochondria and by implication, mitochondrial damage might be a first step in the etiology of PD.
The thing about Oxidative stress damage to mitochondria is that it is self sustaining. Oxidative stress damages mitochondria which in turn creates Reactive Oxygen Species (ROS). It's a vicious circle. It can be fire burning out of control.
There are 2 states to a fire : burning and not burning. There is no in between. When you have 2 states you can flip between them, but can't be half way. A light switch is a good example of a 2-state system. It's on or off and you need to overcome a resistance to go from one to the other.
I have tried to work out how a PD patient might feel if oxidative damage to mitochondria would involve 2 states, a stable one when oxidative damage is under the control of the Redox balance system (which means Nrf2) and a metastable (or unstable) one when oxidative stress takes over and the fire runs out of control.
Let me know whether it makes any sense to you ?
I've written it up as a file that you can find here:
Interesting. Hubby certainly has these extreme changes in state. He has just had a few really good days, but yesterday he was feeling unwell again. I have tried to food diary to see if I can find a correlation but I can’t and meds and supplements remain constant. I am starting to wonder if light is a trigger and if it could fit your model possibly?
Often if he feels good he might have an extended period out doors in bright light whereas normally he will sit inside most of the time. I’ve noticed in winter he always goes down when the football season starts . He goes and watches lots of games and ends up outside most of the weekend and then usually that is the trigger for his annual winter deterioration. I was wondering if it unbalances his seratonin and melatonin cycles. Or whether he is just expending too much energy.
But I have listened to a few of ari whittens podcasts on light and he believes it is important in many energy functions in the body in ways we don’t know yet.
I'm unclear to me as to what timescale you're investigating. You mention:
"I often had attacks of fatigue that could not be explained. They lasted a couple of hours then I was
fine again."
"The example I want you to think about has nothing to do with On and Off
states due to levodopa wearing off. It occurs over a much longer timescale."
All the experience that I've had (15 years post diagnosis) can be explained by levodopa and its complications plus the arrival of new symptoms. In other words, PD, well my version of it, progresses by introducing new symptoms, rather than making initial symptoms worse.
I'll reply to LAJ and JohnT and anyone who's interested here.
Hello to all, Nice to hear from you again John.
First of all, I wrote this piece thinking aloud as a scientist, and made it too complicated. The idea I'm trying to get discussion on is that, with my PD, I clearly observe the existence of 2 states at different times and there may be a scientific argument to justify the existence of the second state. It doesn't actually matter how the second state develops or can disappear. I will rewrite the article to make it simpler.
What matters is that you might feel in a normal state most of the time and then you flip to an abnormal sate with worse symptoms (especially fatigue). This second state appears quite unpredictably and can last for 2 to 24 hours or even more.
For LAJ, I don't have any information on changes in light, seasons or anything like that.
Thanks for your input John. In my case, I'm definitely doing much better than 6 month's ago. I'm on a gradual but clear upward slope, still taking the broccoli tea, but reducing the frequency. I'm now on one dose of tea every 3 days.
So my symptoms are becoming less intense all the time, including tremor which had become a real problem. But even within this context, I get an attack of serious fatigue once per week or ten days that I can't explain except by the 2 state theory. The timescales may be different for other PwP. It's not about new symptoms as such.
I would like to hear from anyone who experiences something like this and can describe it to me.
I'm not sure if what I experience is in any way close to what you are referring to or not. I have noticed that my bad days come & go every couple of weeks or at least monthly. I was using an A B C system on my calendar for about 3 months. A or A - being good days and B's being mediocre & C's we're bad days. I noticed my real bad days come about every 3 weeks and last for about 4-7 days. My bad days are not so much fatigue but really bad shaking, pretty much all over from my waist up, including my face in my chin, lips and the whole head. I was diagnosed 18 yrs ago, I'm 63 now. There are good days about every month, as long as I take my meds, that I feel almost "normal" and they usually last about 4-7 days. All the other days are in the mediocre "B" range.
A question it have is about the NFR 2? I take a supplement called Protandim that is supposed to be an Nrf 2 synergizer to reduce oxidative stress. It also has Milk Thistle, Green Tea, Bacopa, Tumeric and Ashwangda. The first 2 weeks I took it I actually felt normal for a few weeks but then it seemed like it wasn't working anymore so now I just take it sporadically. Do you know anything about it?
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