Am I the only one who, while being truly grateful to those contributors who take the time to research and share information about our illness, struggles to understand a lot of the quite technical (I think) language used, plus many of the acronyms. I find myself interested and desperate to learn but give up because I am failing to ‘get’ what I am reading. I am not sure what the answer is except perhaps the old injunction from my teachers “Sarah try harder!” It is easy to assume that one is writing to a readership with an equal grasp of the science but information is wasted if it is not understood. There are so many brilliant minds on this forum. Sadly, I am not one of them but I would so like to benefit from their knowledge and research, perhaps by a short resume in layman’s language and by not assuming that acronyms are understood in all versions of English. Or is the problem just my brain fog? Probably! Regardless, I love this forum and send good wishes to all.
Is this brain fog or am I just not intell... - Cure Parkinson's
Is this brain fog or am I just not intelligent/educated enough to understand
Never be afraid to ask a question, but maybe Google any unknown acronyms first.
A couple times, I noticed technical terms were used, where it would be difficult for a person, who is not a researcher, or Doctor, to understand, easily, all the wording. Sometimes I just look up a word, or term, that is used, to find out it’s meaning. That has helped at times. Indeed, there are some brilliant minds, in this forum, and we, can learn a lot, from them, concerning Parkinson’s etc.
I have been taking 120 mgs of gingko biloba twice daily.since being diagnosed 4 yrs ago. I started taking 60 mgs twice daily for the side effects of the menopause 25 yrs ago and it made an absolutely blinding difference to my memory and even today at 76 I was bright enough to appear on the C hase, even though I did not win. I read an article by an American neurologist Bruce Fife MD and he recommended the dosage I am now on. I don't follow Bruce Fife any more as his speciality is Alzheimers and thank the Lord I do not have that! I also take twice a day - quite a high dose of Serrapeptase (250000 ius) as the pain generated by PD is quite bad sometimes and this keeps a lid on it - for anyone interested Google Robert Redfern the Serrapeptase Guy. Illuminating. For me now the Holy Grail is of course, vit B1 and my how grateful I am. I am currently taking 900 mgs divided into 3 doses and always after food. No constipation. Legible handwriting. Don't need a stick to walk. Go up and down stairs on two feet not hands and knees which I sometimes did before. No hand tremor and I can actually smile again. I still have problems with my eyes which my eye specialist pooh-poohed and told me to tell my opthalmologist not worry about my cataract - again it is too small to signify. Thank you Serrapeptase for that - one of the claims made for the use of this Serrapeptase is that it erodes cataracts, cysts and scar tissue. My great sadness is that Dr. Costantini died but his legacy lives on. Spread the word and be a believer. Not having faith in what you take will be the death of hope. I buy my B1 from G and G supplements (Google them) - good price and service and my Gingko and Serrapeptase from Vitacure. (again Google them) - good service and price. I get very tired periodically - I put this down to age and if I need to I put my head back and close my eyes, well what is a lost half hour!
Thanks for your information. Could you please tell us what kind of B1 are you taking?My naturopath tells me to take Benfotiamine, not thiamine hydrochloride, he says because it crosses the blood brain barrier.
Has anyone tried benfotiamine? Thanks
I have taken both in my time and stopped the Benfotiamine because some expert told me not to. I have experimented and have been up to 1.5 gms and down to 500 mgs but I do best on 1 gm per day. 2x 250 mgs after breakfast and 2 x 250 mgs after lunch. I still have the benfotiamine in my drawer and will take them when the B1 run out. (I buy them from a Co. called G&G. They come recommended from the company I use for gingko biloba and serrapeptase) Unfortunately I find the whole Parkinsons crap very boring . I would not be without 120 mgs of gingko biloba morning and evening and 2 x 2500 i.us of Serrapeptase per day. I buy these from the internet - a company called Vitacure supply these, Great service. Something is keeping me going. Since the B1 I have no constipation, I can write legibly, I can stride out when I walk and I sleep well. What more does any 76 year old want. Dr. Costantini lives in my heart.One more thing before I bore you to death - oh and I have no noticeable tremor, just the Parkinsons mask intermittently. I found a book (on my bookshelf unread) called Reverse Parkinsons Disease by John Pepper. Very life affirming. By the bye I am still on the lowest baby dose of Sinemet 3 times a day 25mg/100mgs. Which amazes the Parkinsons nurse and an amazing amount of people say "You would never know!" I know !! dammit! But I am not depressed and people do not avoid me - yet! Good luck!!!!!!!
Thanks very much for your information. I appreciate.
Can you tell me why expert told not to take Benfotiamine?
And is your B1 thiamine hydrochloride or something else? Thanks.
I t is no biggy. As I understand it one Thiamine HCL is water soluble so if you take too much you excrete the excess in your urine (pee it out) and the other needs fat or protein. Too complicated for me. I stick to 1 gm / 1000 mgs divided into 2 doses one after breakfast and one after lunch. The upside is too great to ignore. I have said this before and I repeat - I eat and sleep well. I have very little constipation. No tremors to speak of and I write and walk normally. Stairs are no prolem. It is wonderful to feel in control. Try before the disease gets too great a hold. I am definitely better than I was on diagnosis.
Thanks for your reply.Do/did you find Benfotiamine give you the same good effects as thiamine hydrochloride?
And both help with tremor?
Is your tremor whole body or just hands? Thanks
I was very new to this Thiamine/Benfotiamene thing and as I saw no real reason to go the Benfo route I just bought straightforward Thiamine HCL as recommended by Roy Propsner. I have very slight tremors rarely but am lately suffering from very cold hands. I know it is cold outside but it is 23/24 degs in here and I should be wearing gloves. Take the normal B1 from G & G supplements = I buy 250 mgs - they came recommended by the company from whom I buy my gingko biloba and serrapeptase. Neither of which I would do without.
A lot of the technical papers are a white knuckle ride for most of us and there isn't much can be done about that. Other than that, I think you're going to need to be more specific if there's something you want explained
When it comes to my writings I welcome your questions, and probably likewise for most of the writers here. Also Google helps a lot.
It's possibly better to mention when something that you are interested in reading is harder to understand so that whoever wrote the post you are interested in reading can try to clarify it for you. People on this forum seem to not have a problem with answering questions. If you are having difficulty understanding a post, that means that other forum members are likely having the same problem, so if you bring it up when you are having this issue, other members will be better able to understand a revised explanation that you are asking for too.
Art
Sarah, Frequently posts contain quotes from medical research articles which are full of unusual terminology many of us are not familiar with.
So don't feel bad, just ask for clarification as others have suggested and there will be more people than you would know grateful to you for asking.
Very Strange Sarah, because I think you are one of the smarter ones, what you write is well thought out and expresses shared concerns and interests at a high interactive educated social level. Instead of those responding acknowledging the problem you got a few pats on the head .
Maybe what you are reading is garbage and just does not make any sense. If one needs to google to understand more than one or two words than the author has not done his job. I would suggest that the average person here is a patient and not a doctor or scientist.
I find posts that I have no idea what is being discussed and they usually copied technical reports that are a complete waste of time.
Maybe instead of a race to copy the latest stuff people could stop and explain what is being said and why it is so important that we read it. Did any one have to google any of this ?
To be fair, although I haven't had to Google anything, I didn't learn anything about PD or medical research either. Having just read a couple of other posts peppered with responses in pseuds geek, I wonder if Sarah had one individual in mind.And she isn't either of us 😂
You don’t really need to understand the ins and outs of how everything works for it to help you, just if it works and is safe! But always check any interactions of supplements and medications before trying anything. And make sure you aren’t doubling up on things if a supplement contains multiple compounds.
Just ask. But when you don't want to, search in Wikipedia. One tends to learn background more and better anyway when one is following ones own curiosity to know what it is about. Wiki will give included underlines of further terms used, often has good references to be followed up, becomes a discovery enterprise that can be a great deal of fun, plus you depend on no one. Can quickly get you to be where you want to be in terms of considering, sifting and appraising what you then read here.
Khan Academy and Science of Parkinson's blog are also good resources. I read a criticism of SoP blog recently that complained about use of latin terms - but some brain regions have latin names & they have to be called by their names if you want to discuss them. SoP blog always explains all the terms used in the posts.
So well written and exactly the way I feel sometimes when reading many posts but I am evolving. I always try to read the full text but sometines skip to the summery part, also having a google helps. It is difficult but becomming easier as time goes by.
Hi Sarah,
It's not brain fog, it's the language used.
I'm a research scientist , but for most of my career I worked in physics. When I got PD, it took me more than a year to become comfortable with the language and acronyms in PD research. There's a technique to learn how to read this stuff... it's the same as reading a novel with lots of characters with names you can't remember or place. When you come across an acronym, just think of it being some unknown object or process and move on. If the same one keeps cropping up , then look it up in wikipedia, they usually give quite good explanations. Even so if, for example the acronym is a complicated process or a protein that has a complex role, then you may still not understand it all, but at least you'll know vaguely what it's about and you'll remember that. Any article that uses the same acronym repeatedly should be telling you what it does or why it's important. It's quite impossible to be fluent in all the subjects that come up in PD , so try to limit your interest to just one or 2 areas at first. Stay focused on those and go into them in depth. It may take 6 months to become comfortable in these one or 2 areas.
After that you can move on to others which you will find easier to grasp.
If you have questions about my posts, just ask.
My latest stuff about a model was too complicated and I promised to write an easier version, but I haven't had time yet. I'm doing too many things at once, but I'll always find time to answer pertinent questions.
Wriga, thank you so much for your reply. It was worth starting this thread to discover your posts which, encouraged by the clarity of your response to mine, I am now in the process of reading. Of course, I am not understanding everything but, because your style of writing is accessible, it encourages a desire to make sense of it, looking up scientific/medical words where necessary. I tend to dip into this forum when something in the daily digest sparks my interest or contains information I am seeking, largely glossing over anything that might be too ‘challenging’. I now realise that has been a mistake. It seems to me that your style of writing does not assume your readership has scientific knowledge even if you necessarily use scientific words which are specific to the subject. As a number of people have pointed out, there are easy sources for looking up individual words. It is when those words are packaged in language that I just can’t ‘get’ that I give up. I am probably not explaining very well. Suffice it to say, that I feel encouraged that, while my original gripe may have been justified to some extent, there are hard working people like you who understand that we are a mixed readership with differing knowledge and abilities. I am very grateful for that and to have discovered your work.
This is a complete aside which should probably be in another thread but has there been much study into a prolonged disturbed sleep pattern being a contributor or cause of Parkinson’s?
Sarah
Hi Sarah, Thanks for your kind words. It's replies like yours that encourage me to share what I'm doing.
A word of caution , what I write is what I think I understand about PD. It's not the absolute truth because I don't have all the answers to my own questions and doubts. What I believe today may change tomorrow. Bear this in mind when reading articles about PD.
About disturbed sleep. My understanding is that it is a non- motor symptom rather than a cause of PD.
Hi Sarah. Just to say, thank you for your post. I feel exactly as you do.
Hello everyone
Thank you for your thoughtful and varied replies. Forgive me for not answering you individually at this stage. I am in the process of getting ready to move house and there aren’t enough hours in the day! Perhaps I should not have started a thread if I could not actively follow it. However I did so .....
I have absorbed everything you have said - so many nuggets of advice, some pure gold, all encouraging me in a kind way to ‘try harder’. My recurring thought has been about time and made me wonder what I am doing with my days that I don’t already spend minutes and hours looking things up on Google and Wikipedia. You get out what you put in and I obviously need to sharpen up my routine if I want truly to benefit from the efforts you make to impart precious knowledge. It may sound strange but I live a lot of my life inside head, not in a depressive way but trying to work out this curved ball that life has dealt me. It is an indulgence when you live alone. The disease itself can make for insecurity about one’s intellectual function and I have tended towards a reluctance to put my head above the parapet to ask questions and seek clarification. Well now I have raised the issue and I am reassured that it is ok to show ignorance and perhaps someone has to in order to help others as well as oneself. We all have a part to play and I don’t think it hurts to remember that our contributions are read by a mixed audience all trying to find the key which might unlock the path to a Parkinson’s free future. I would hate to think I might have missed the magic bullet because I glazed over before I could read about it. So yes more questions but, wherever possible, more layperson’s language please, at least as a précis. I have already found a site called AcronymFinder.com so I am on my way! Thank you again everyone. You are the best. Sarah
I am a Fellow of the Society for Technical Communication. A technical writer by trade, I spent most of my career in the computer industry and it drove me wild how "techies" spoke their own language and looked down on those who didn't understand it. My job was to translate their goboldy-gook from techie to plain language and I did this by continually asking questions. The idea was to get the language down to a state where a seventh-grader could easily understand it without asking questions or stopping to research anything. When you have to stop to question or research a topic, it breaks your concentration and, thereby, your ability to understand it. The best writers have the ability to write so their entire audience can understand the content.
Dear SonarsMom
You have completely summed up the issue here. My career was in the broadcast industry, in engineering departments, but in a non-technical capacity. In the good old days before our national broadcaster became so arrogant that it feels itself beyond criticism, there was always a duty engineer who would monitor programme output, reporting on technical issues and helping viewers if they had reception problems (this was in analogue days). A friend of mine who was a bit of a wag, was on duty when a Welsh language programme was going out with subtitles on the national network. When he filed his report he confirmed that all video parameters were positive but wrote that audio was unintelligible! His supervisor was not impressed and he was smacked on the wrist. My point is that communication does not happen if language cannot be understood. My friend was trying to be funny but had there not been subtitles he would have been correct. When we watch foreign language programmes, unless we are linguists, we need subtitles. So really is it any different when we are trying to make sense of technical or scientific writing? I am not sure that we can do any more than has already been suggested (and the last thing I want to do is inhibit people
from sharing their research) but at least it is important to recognise that we do not all understand jargon and are possibly missing out on the very information that the writer is taking the trouble to pass on. I think the same can often be said about legal language but that is a whole other story. Sarah
Sometimes posting a paragraph or two to this forum, or any for that mater is physically exhausting for those with a more advanced severe form of Parkinson's or related illness. Shaky hands and contorted spines are an impediment to lengthy writings, even voice to text apps don't work as well as we would like.
Lotsopasta,
I think your situation is quite common as this forum has a membership of almost 19,000 members and yet there are probably only about 200 active posters. It is important that the other members are aware of this.
Art
I find myself skimming until I get to the part that tells me what I should do! Some of the articles are so long and complicated, and most don’t seem particularly definitive either It is handy that keener minds are onto anything new.
Sara, I’m with you. In the end I read the post, look at the bottom line and trust the scientific minds of those members who I learnt to trust.
As it turns out, I am guilty of writing as you spoke of! Today I was having a conversation with one of my PD friends and I asked him if he had read the post I put up on the forum regarding combining different ideas about PD because I wanted to discuss it with him. His answer was yes, he had tried to read it but it soon got to be more than he could comprehend. There I was thinking that I usually write clearly and understandably and he was basically telling me that I didn't. I know his cognitive abilities have declined a bit, but I don't think that much.
I will somehow have to try harder!
Art
Sarah, my friend, I have a simple idea for you that may help with the struggles you described. Get on to the weekend ZOOM meet ups with the great people of this group! They are pleasant as can be and patient to explain ideas and concepts. Don't be shy, they're all good people.
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