For the last several years I have been abscent from HU because I worked on and completed a documentary about the early 20th century disease, encephalitis lethargica. If you ever watched the movie 'Awakenings', featuring Robin Williams and Robert DeNiro, you know its victims slept for 4 decades before being temporarily 'awakened' by the new Parkinson's disease drug levodopa. My doc 'Presumed To Be A Virus' is 78 minutes long and I investigate symptoms of the disease, which include parkinsonism, the various therapies and possible viral/bacterial causes of the disease. The disease is a medical mystery which has never been solved and without another major outbreak, will never be solved. So far I have entered it into 4 competitions and we will see what happens. I hope you find it interesting.
Hi Silvestrov, I only watched bits and pieces of the first four (?) videos, but did watch the entire discussion video.
If I watch it as something independent of the HOW and WHERE of neurological diseases, I find it interesting. If I watch it with what insight does it give "ME" to current brain diseases such as PD, and PRIME OF LIFE BRAIN DISEASES? I find it makes me sad.
Jeff's Kaiser Permanente general practitioner theory is that ALS, PSP, etc are caused by viruses. That gives me no hope.
Anyway, I'm glad you finished another project. There has got to be a sense of fulfillment in that. I do wish you well in winning....... one or more of the competitions.
At a human level encephalitis lethargica (EL) is tragic disease, at an academic level the disease is fascinating and bizarre. Many, many scientists favor viral etiologies for ALS, EL, etc...which is normal of the era in which we live but let's look at Alzheimer's disease as an example:
There are competing theories for most neurological diseases but definitively finding the cause or causes, remains problematic.
Today I was reading the NEW YORKER article 'Linda Ronstadt Has Found Another Voice' and Ms. Ronstadt states, "I have a form of Parkinsonism that doesn’t respond to standard Parkinson’s meds, so there’s no treatment for what I have. It’s called P.S.P.—Progressive Supranuclear Palsy."
I know most journalists are not scientists but PSP is not Parkinson's disease and I just wish their reporting was better. The interviewee uses the following as a header:
"The singer on living with Parkinson’s, the perils of stardom, and mourning what the border has become."
Regarding Linda Ronstadt, I totally agree with what I believe is misinformation (Psp vs PD). MY son, Jeff, died of PSP (although one doesn't know unless a brain autopsy has been conducted). I don't know if Ronstadt is mimicking the DX that her Neuro gave her or what. I do feel, I don't know, that she has the $$$ to seek the best of medical help. I do remember when she was first dx with PK that she mentioned that a grandmother or near relative had had it before her. Occasionally, there are others on this site with a new dx of PSP who consider the dx to be a continuation of PD. I reluctantly refer them to the other site (PD is so much more benevolent than PSP).
I scroll this site because this seems the best place to hear of the newest neuro info (aside from medical research sites). I ALWAYS go to the PSP site and and often need to correct info regarding that PSP or CBD (or any of the other PRIME OF LIFE BRAIN DISEASES......PSP, CBD MSA, FTD, ALS, AND CTE) are just a progression of PD.
Anyway, I always like connecting with you......and again keeping positive thoughts about you winning most of the competitions you have entered.
I featured this encphalitis lethargica (EL) article in the doc and Dourmashkin referenced the studies of Loewe, Hirshfeld and Strauss (LHS), as evidence of a virus as the cause of EL - in this instance he is on shaky ground (for a number of reasons). In their early studies LHS stated the cause of EL was a gram positive virus. Gram staining (GS) visually identifies only bacteria and viruses remain invisible when Gram stained. When GS is used to identify 'living cells' which form the background behind viral-infected areas, they are called Delbecco plaques (and the viral areas remain acromatic):
Secondly, enteroviruses primarily cause disease in children and though children did become victims of EL, the disease was more prevalentt in adults. The best article from the 1920's which discusses the possibility of EL being caused by an enterovirus is 'The Winnipeg Epidemic of Encephalitis Lethargica'. In addition to being one of my favorite articles from the era, it is well written and inciteful, I used it as the introduction to the epidemiology segment.
In Dourmashkin's article he noted the enteroviral particles found (in EL brain material) were the Coxsackie B4 and polio virus's. When infected with the polio virus "1 in 200 infections leads to irreversible paralysis. Among those paralysed, 5% to 10% die when their breathing muscles become immobilized."
In a case of an El-like illness caused by the Coxsackie B4 virus: 'Coxsackieviruses and echoviruses are common causes of aseptic meningitis, but they rarely cause life-threatening illness.' jamanetwork.com/journals/ja...
In both viruses the mortality is too low when compared with EL. Between 20 - 40 % is the mortality for EL infections and this is more in line with streptococci infection (30 - 70 % mortality) msdsonline.com/resources/sd... , the alternative bacterial etiology to a EL viral hypothesis.
I could blather on and on but when scientists state this or that virus is the cause of EL it is just a hypthesis, as is the theory proposed in my documentary. I am afraid there is not enough information to prove what caused the disease though people have their 'pet' favorite theory.
According to the Encephalitis Society: 'More recent work linking EL to a streptococcal infection may prove more compelling than the influenza theory.' encephalitis.info/encephali...
Thanks for replying and have a good Sunday!
Rich
PS. I have read Dourmashkin's Parkinson's enterovirus paper and without some sort of animal model, it will be an academic novelty. To my mind, the most compelling Parkinson's disease theory are those which feature an animal model and for my money, this is the best theory of PD:
Thank you............I have read both articles carefully. I will go back another day and reread them.
I hope YOU are doing well......and if there is remission, that you are there (with the help of all the supplements research you have done and apply to yourself).
I haven’t seen your video yet or Awakenings but have seen a clip of the real patients Oliver Sacks worked with and they looked like me in a severe off state. I look forward to watching your film.
Here is the film Awakenings. The file is in a hi definition format (1080P) and will take a while before it downloads enough before you can watch the film. Unfortunately the film is dubbed in Italian but there may be a way to see subtitles...will look into that.
I look forward to watching your film and your presence and insight has been truly missed! I hope you will stop by more often!! Thank you and Congratulations on what I am sure is an excellent documentary!! Connie 😊
I just couldn't hear well enough tho I turned sound all the way up on IPad. I know I can read some of it but my eyes have been blurring. My father had Equine Encephilitis in '40's I think....in Kentucky.before I was born in '44. in Calif. My mom and grandma would talk about his slow recovery but I never found out the exact dates. They said it was from a mosquito. I wonder if his condition could've affected me at my conception. I have Fibro. and have had depression/anxiety since childhood and want to sleep alot. It's my husband who has PD. and he sleeps a lot too. Could be meds.
P.S. I also have the active Epstein Barr virus. Related to Encephilitis?
I really hate computer compatibility issues and think the reason why you are having difficulty watching/listening to my doc is you have an IPAD and the files I uploaded are WMV files. WMV are windows files designed to stream online. They are highly compressed so their size is small yet have good quality. Here is a link describing the problem:
"For example, if you want to play WMV files on iPad, you will find that it’s a bit difficult…"
For a while I dated a woman with fibro and have studied the condition. The following article, 'Is insulin resistance the cause of fibromyalgia? A preliminary report', has the most recent thinking about the disease:
"We show that most (if not all) patients with FM belong to a distinct population that can be segregated from a control group by their glycated hemoglobin A1c (HbA1c) levels, a surrogate marker of insulin resistance (IR)."
"A subgroup of patients meeting criteria for pre-diabetes or diabetes (patients with HbA1c values of 5.7% or greater) who had undergone treatment with metformin showed dramatic improvements of their widespread myofascial pain, as shown by their scores using a pre and post-treatment numerical pain rating scale (NPRS) for evaluation."
I would get your HbA1c levels tested and, if you have insulin resistence, ask your Dr for a metformin prescription. There is no guarentee you will get one but print out the above article and take it with you.
I will look through my notes for other Fibro therapies. I remember which supplements to use but finding the links would save some time.
Just from doing a search I found:
Eastern Equine Encephalitis (EEE) ----- (probably not related to your fibro - Rich)
"EEE is only spread to humans through the bite of an infected mosquito. EEE is not spread person-to-person, people to animals, or animals to people."
Evaluation of Antiviral Antibodies against Epstein-Barr Virus and Neurotransmitters in Patients with Fibromyalgia
"The obtained results revealed that high EBV IgG concentrations in the serum of patients with FM correlated with pain intensity and associated clinical symptoms. This is consistent with the fact that FM is connected to the immune response to certain infectious agents (e.g. EBV, CMV)."
1st...I do have type 2 diabetes, or pre-diabetes. My last A1c was 7.2 tho I have had tests lower than that and I have taken Metformin for several years, 3 or 4, 500mg. pills a day...but my diet is terrible. Veggies affect my intestines, as does fruit, so I limit them even tho I like them. I avoid milk but cheese seems to be ok. Meat is fine, usually beef. I crave salty or sweet, not so much chips but I have homemade. popcorn in the eve and have some kind of sweet. Altogether I figure I have one complete meal a day, easy stuff to make and involves potatoes, rice or pasta. Today tacos. It doesn't seem like Metformin has lessened pain. My sister had pain that Drs. couldn't figure out. She drank due to it but I never saw her drunk. It was sort of continuous as was smoking. I do neither but would enjoy wine or another kind if it didn't bother my GERD and it's not good with meds. I take. She died in '87 of sudden heart attack, at almost 54. I'm 75. Bro. died of cancer at 57. Parents died at ages 84 and 89.
I didn't figure my fathers EEE could be transferred to me but I thought it may have caused a susceptablity to depression, since childhood, and maybe Fibro and fatigue. Maybe Epstein Barr. My birth weight, 4lbs 9oz kept me in hospital in incubator at first and probably not touched much, until 6 lbs. Don't know if that's a factor. Just have wandering thoughts about it. Thank you for info. M.A.
Thanks for the kind words and I am glad you found it interesting. So far I am 0/4 in various documentary/science documentary competitions. I am not surprised because it is not a 'feel good' type of doc....lots of science at the pace of a 70's foreign film. Oh well I will post any successes and by May I will receive all the remainding decisions.
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Hi my question is do I have Parkinson's
How Do I Live With This Disease?
Message to Silvestrov: Thank you for the intense and thorough research you have conducted and shared to benefit the sufferers of PWP.
How I manage my symptoms, hoping to slow down progression of Parkinson's Disease.
