When you have the Tiger in the room (metaphor of the PD) tend to be a little worried about the future, because sooner or later the Tiger will be hungry. This constant worry is called anxiety, and a person tends to be rightly a little anxious. It happened that one of my previous doctor tried to pass the symptoms of PD at the beginning as due to anxiety so that with a couple of psychotropic drugs to solve everything. I changed she promptly. Living with the Tiger could make you anxious, but it is not an inadequate and therefore pathological emotion, but a right concern that is adequate to the situation and rational.
My Tiger with the B1 purrs for now, we are all very quiet , and my mood goes from boredom up to the enthusiasm still passing through the interest in life, but I never let down the guard.
The Tiger is always rather unpredictable.
Gio
Photo: my cat called precisely "Tiger" perennially bored.😀
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Of course it would be best not to have PD in the first place, but failing that,It is my modest opinion that being able to do something, anything, with the hope that it works, helps a lot to decrease the anxiety.
I read a story about the U.S. sailors serving as cooks at Pearl Harbor during the Japanese air attack. Some of them began to throw potatoes angrily against the planes, having nothing else; even knowing that it would not be useful, well these sailors were the only ones not to end up in shock. You can imagine what a bad experience it was. Moral, if you can do something, do it, it will help you with the spirit and maybe with the body. For example, a bit of exercise and many walks looking at the landscape can not be missed by a PWP. Thiamine could help you with PD, but also for anxiety maybe, but I do not know. I know that for the spiritual nature that we are whatever happens to us, then we will recover! 😀
I think the message you're trying to convey in the later parts of your main post is lost in translation
Don't completely trust translating software, they let us down a lot. Language is the face and mindset of a culture and an art that often defies logic. And so there is often no one-to-one logical translation from one language to the other. But translating software try to do a one-to-one logical translation and gets it all messed up
For your longer, more complex posts, try first to email your post to an Italian friend who also speaks English to proof read first
This is just to make sure we don't miss out on the lovely message you're trying to pass across
I make my own fair share of typos and grammar errors myself, thankfully the posts here are editable
Grumpy, Now you tell me? 😂 are months that I write like this. So you do not understand anything about what I've written since now? Could you tell me before? 😂
Joking aside, you're right now I'll correct something, if I can. I apologize to everyone for the errors and thanks for your patience.Gio
Agree! What counts is the idea of relaying courage and optimism. No problem with the translation, Gio. You are the BEST, keep fighting the TIGER. We all do with whatever it takes.
I normally carry myself with my PD as a badass tough woman , but today I’m having a weak day and struggling a bit so I thank you for your words of courage , no matter what translation . We all need them from time to time to fight our fight . Karen
Yeah, I find DOING stuff helps a great deal with anxiety about the future. In my case it's a keto diet, supplements, and I'm also on a new drug (possible treatment, not for symptoms) as a subject in a medical study. All of those things together give me hope...like if one doesn't do it, another might.
Despe, Giocas-- HA ha ha it's called something like GYX28374#%&$28%*DR34$#ST4. Because it's new and unapproved.
Actually, it DOES have a name: venglustat, though it took a lot of internet snooping to figure that out. I even understand how it works, but that took a LOT of internet snooping, and a fair bit of background in chemistry.
This study is only for folks who have a GBA mutation, a (relatively) common cause of PD. But... read on...
GBA codes for an enzyme, and when you have the mutation, you don't make it properly. You need that enzyme to clear gunk (particularly in our case, alpha-synuclein, the bad neuron-killing guy in PD) out of your brain. To make a long story very short, the drug helps with that clearing out process.
The interesting and exciting thing is: though obviously folks with the mutation don't make enough enzyme, it turns out (surprisingly) that LOTS of folks with PD don't make make enough either, for unknown reasons.
So if this drug can clear bad neuron-killing gunk out of GBA brains (like mine) it might work for everyone else's. That is what they are hoping! :o)
No, the difference is, with these drugs, the biochemistry came first.
In the case of B1, people SEEM to see results, but I don't think anyone understands why. And, only while on levadopa, I believe. It is not expected to slow the underlying course of the disease. In other words I do not think B1/thiamine is neuroprotective...is it? But either way I do not think anyone has a good explanation for why.
In the case of venglustat, there was a mechanism proposed that made sense. (the clearing out of alpha-syn.) Then they tested it...first in animals, now in people.
BTW, with B3--which I take!--there is a mechanism proposed to explain it. B3, niacin, is a precursor to NAD, which is important for mitochondria to function. Poor mitochondrial function is one of the problems for people with PD. Keeping them healthy keeps our neurons alive longer!
There are many forms of B3/niacin, and there are studies right now testing them in PD. The "best" forms--the kind most easily taken up by the body--are of course, researched, patented, and expensive, too! When they find the kind best for PD, the kind best for neurons, don't you think it will be even MORE expensive? Research isn't free!
I'm sorry...you will probably have to put this into google translate :o)
Actually, I shouldn't say always researchers know the biochemistry first, because they don't. The most important thing about research is that in order to do it properly, you must have a group of people ON the treatment, and a group of people NOT on the treatment, (taking a sugar pill) and neither group can know who they are. And the doctors examining them cannot know either.
That's especially important in a disease like parkinson's which is so subjective, and different day to day.
I know, by the way, that folks are trying to get B1 into a research study. I think they should!
I could answer with a lot of theory in favor and against the b1, but we are a bit out topic here, I ask only one thing, which often I ask for me too: how do you know that it works as you say? I mean how do you measure it and how do you know that it slows down the progression? there is a third person who evaluates you. For all the rest you're in the right place ie here on HU, but open your Post would be interesting to follow you.
Just because of the neccessary controversy: I do not use the translator to read English, only the dictionary for the difficult words you use to create mystery, and you do well, but I understand well the intentions in any language.
So You and I have a big problem in common, the PD.
I know, I have read the theories too! And it is VERY hard to measure improvement!
So, GioCas, we are off on vacation for a week, to Malta (are you in Italy? not far for you, very far for us) and we will be offline. I will not chat for a week, but it does not mean I am not interested!
I can do a lot more explaining...if you like. But I don't want to bore you!
If you are interested in being in a study yourself, get on clinicaltrials.gov. Write in "parkinson's". Check "interventional". (that means the researchers aren't just WATCHING to see how you are progressing--they are trying to DO something about it).
And this is what I did: I read the description carefully to see whether the drug was to treat symptoms, or actually treated the progression. Also, I checked to see whether the drug was something I could just get myself. (An example of this is the SURE-PD study, where they give inosine to raise uric acid levels. It MIGHT slow progression--great--but inosine is a common OTC supplement. I don't need to be in a study to try it.)
Last--there is always a chance you could get stuck in a placebo group and waste time taking a sugar pill...unless the study does a switch, or an "all on" phase. In the case of the venglustat study, for one year it's half and half. But for two more years, everyone gets the drug. So it's worth it.
Doing something helps the person doing the something even if it does nothing for the end result. That is powerful. Thank you for sharing. I hope this translates OK.
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PD warrior in the UK
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things I've learned in 25 years with PD
Questions in my mind now.
