Parkinson's Disease Tulip

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Old 03-05-2020, 11:57 AM #1
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Default The case of Michael J. Fox. What can we learn?

"Parkinson's saved my life."
Michael J. Fox

We only understood this phrase when we got to know his case better and over the years. My vision of Michael J Fox will be forever linked to my father's fight against Parkinson's from 1994 to 2012.

After the death of Pope Karol Wojtila or John Paul II in 2005, my father turned his attention to another famous figure with Parkinson's disease as well: Canadian and American actor Michael J. Fox, famous for his films (Back to the Future) and his television series. Although he was much younger than my father was, the figure of the boxer Mohamed Ali (Cassius Clay to my father's generation) was a bit distant because he assumed that his parkinsonism was pugilistic, that is, because of repeated blows to the head throughout his career as a boxer. However, Fox's Parkinson's seemed a mystery, a challenge. We both liked each other very much.


1. Years and events in the life of Michael J. Fox.


A brief chronology of his life can help us better understand everything:

1961 Birth.

1976-1980 TV studies in Vancouver (possible "cluster" of juvenile Parkinson's patients: 4 out of 125).

1987 Suffers from Lyme disease (produces parkinsonian symptoms).

1990 Tremor in a finger.

1991 Diagnosis and treatment (abuses Sinemet to maintain his career).

1993 Treatment to accept the disease and stop alcoholism.

1998 He goes public with his disease and has an operation (thalamotomy).


2. Inspiration and hope for many and for my father.

Moreover, the Foundation he had created in 2000 with his name was one of the most important sources of hope both for finding more effective treatments with fewer adverse effects and for curing this disease, since as he was the sick actor himself, nobody could be more interested in finding a cure than he himself, above economic and other interests (as his illness progressed, my father became more distrustful).

In fact, every day I visited the Michael J. Fox Foundation website and translated the most interesting news for my father.

As a Parkinson's patient, we found Michael J. Fox's case very motivating, even exciting because of the unknown information we were discovering.

It wasn't until 1998 that he went public with the disease because he was afraid it would hurt his acting career (People magazine).

Between 1976 and 1980 he recorded a Canadian television series in Vancouver called "Leo & Me", which would lead to the hypothesis of a Parkinson's "cluster", as 4 of the 125 team members developed the disease relatively young.

In 1987 he suffered from Lyme disease (from tick bites and the toxic effect of the "Borrelia burgdoferi" bacteria), which he acknowledged to David Letterman on his television show, was treated with only four weeks of antibiotics. The toxins produced in this disease affect the central nervous system and are associated with Parkinson's symptoms.

By 1990 his little finger had begun to tremble. He was 29 years old and went to the doctor and in 1991 he was diagnosed with Parkinson's. He started taking levodopa (Sinemet) and, he later acknowledged in the journal, abused the medication to gain more control over his symptoms and to cope with his film and television commitments.

In 1993 he underwent psychological or psychiatric treatment to accept his illness and stop the alcoholism he had suffered from at a very young age (as he confessed on the "David Letterman Show").

The abuse of medication led him to need a surgical intervention in 1998: a thalamotomy.

The medical case of Michael J. Fox may date back to the late 1970s, when he shot a television series in Canada, in the underground television studios of Vancouver, British Columbia (Canada). In those years he was under great stress, shooting day and night for film and television. Alcohol consumption may have played a role in the wear and tear on his brain cells.

What's really strange is that other teammates from that time also developed Parkinson's at an early age, which was less frequent in those years, so some authors have raised the possibility of a "cluster". There were 4 out of 125 that made up the team.

A regular consumer of diet or light colas since the 1970s, he is still advertising today. The abuse of drinks containing aspartame, which is used as a sweetener in soft drinks and low-calorie foods, has been linked to Parkinson's, although the debate continues (Dr. Russell Blaylock considers it as an excitotoxin).

3. A possible "cluster" in his youth.

Strong stress at such a young age, alcoholism from adolescence, perhaps exaggerated consumption of diet soda (caffeine and aspartame), Lyme disease at 26-27 years and some other aspects of his personality, may have led Michael J. Fox to suffer from juvenile or early-onset Parkinson's disease at 29 years of age.

In an article written by Mary Duenwald for the "New York Times" on May 14, 2002, the famous Dr. Oliver Sacks spoke about this news stating that if the existence of a "cluster" in Vancouver was confirmed it could suggest an environmental or occupational agent, both infectious and toxic.

Decades ago, Parkinson's cases at an early age were much less frequent than they are now, according to interviews in North American newspapers by Dr. Carolinne Tanner (famous for her studies on twins and tobacco) and Dr. Donald B. Clarke (the odds of developing Parkinson's were 1 in 20,000 in a group of 125 people at that age).


4. One final thought.

At this point, I have mixed feelings about the actor Michael J. Fox. Just because he have Parkinson's, I like him. I have admiration and respect for his fight against the disease at such a young age.

But I also feel somewhat disappointed. My father trusted that "Michael" would find "something" until the very day of his death. I don't know if I'm being unfair in saying this, but I expected a lot more. I don't know if we will have another opportunity like this: someone famous, capable of mobilizing a lot of resources and worldwide public attention.

To imagine Michael J. Fox speaking in public about green tea polyphenols to prevent the disease, about the central role of homocysteine in everything related to Parkinson's and its reduction with vitamin B9, about the possibility of preventing it or slowing down its evolution with glutathione, vitamin D, etc... would have been an overwhelming force, an unimaginable influence on the whole world.

Because our battle is not only against Parkinson's disease, but against certain aspects of the Parkinson's world. We need to change a lot of things. First of all, the way we look at the disease.

I am convinced of the goodness and courage of Michael J. Fox. So I still expect great things from him and his Foundation. Although I also understand that it is extremely difficult.

A recent book -Ending Parkinson's Disease: A Prescription for Action- by Todd Sherer, a CEO of the Michael J. Fox Foundation with the three authors of the 2018 study, Dorsey, Bloem and Okun (about the Parkinson's "pandemic" we are living through, -The Emerging Evidence of the Parkinson Pandemic-), fills me with hope. And I wish them much luck in their endeavors.

The biggest lesson I can draw from his case is that possibly all the risk factors that could have influenced Michael J. Fox's Parkinson's were preventable with what we know today: alpha-lipoic acid, green tea polyphenols, folic acid, vitamin D, vitamin B6, large doses of vitamins C and E (including tocotrienols), NAC as a way to raise glutathione that has not been found in the SN from parkinsonian autopsies, silymarin from milk thistle for the liver, etc. All this is supported by scientific studies of neurologists and other prestigious researchers (Fahn, Olanow, Ahlskog, Karobath, Birkmayer, Suzuki, Lombard, Marjama-Lyons, Siniscalchi, Monti, etc.)

Whatever happens, I wish you the best as a person and as a Parkinson's patient.
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Old 03-06-2020, 12:13 AM #2
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[QUOTE=parkinsons here-now

the hypothesis of a Parkinson's "cluster", as 4 of the 125 team members developed the disease relatively young.
[/QUOTE]

I don't think the evidence for this is convincing.

Many people search for clusters, not just for frequency of PD but frequency of cancer or many other things.

Almost always selected clusters showing a relatively high frequency of PD (or cancer or whatever) are what are called Type 1 statistical errors; seeing a pattern when there is just random noise.
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Old 03-06-2020, 04:06 AM #3
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Please see my analysis:

A simple test to detect self-evident clusters

This is an example of a post hoc analysis: where you collect data then cherry pick a conclusion that fits. You expect a much higher bar in these circumstances. Nevertheless, the Fox statistics get close … though, even as a write this I feel that I'm being sucked into my own post hoc analysis!

John
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Old 03-06-2020, 03:15 PM #4
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Default Maybe the whole world is already a Parkinson's cluster.

Thank you kiwi33 and johnt for your critical comments regarding the non-existence of the "possible" cluster.

My knowledge of English is still far from capturing the humor, irony or sarcasm well, but I'm getting the picture.

My intention was to expose what Michael J Fox meant and means to the Parkinson's patients I have talked to about this (and to my father in particular).

Anyway, I was a family caregiver and I am a historian, not a scientist or a statistician. I am not concerned with the dilemma between objectivity-subjectivity, but with the honesty of the exposition. In the first instance, to put on record all the facts that might be relevant now or in a future, when we know more about Parkinson's. This is the case with Lyme disease, which we know much more about than we did when Fox was treated in the late 1980s.

In fact, what I think about Parkinson's today is 100 percent different than I thought in 1994.

I still find the observations of Dr. Sacks, Dr. Tanner or Dr. Clarke to be of some importance so as not to rule them out. Not to affirm, but to not deny.

There is no need to look for a "cluster" at the end of the 70s, when the whole world, especially the industrialized countries, are on the way to becoming a gigantic "cluster" in which the number of sick people has doubled between 1990 and 2015. Faster than Dorsey had predicted in his 2007 study. And it is feared that the next decades will double or triple again if we don't do something very different, as neurologists Dorsey and Bloem recommended in 2018.

In any case, the existence or not of the cluster seems to me to be a curious aspect, but nothing more. Tanner's reference to THE RARITY OF PARKINSON YOUTH CASES IN THE 70s seems more than interesting to me, as she is a world-renowned expert on Parkinson's, especially for her studies with tobacco and identical twins.

Two things are essential in this story: first, the case of Michael J Fox with many of his risk factors and, second, whether in light of what we know TODAY IT WOULD BE POSSIBLE in his case (as a stimulus for those facing him today) TO PREVENT THE DISEASE, as is the case with the consumption of coffee, tobacco, NSAIDs, green tea and a long etcetera.

What is really decisive is to bring together the possible causes of his Parkinson's disease based on what Michael J Fox himself stated in various interviews and books throughout his life. He is not sure about a blood test, an MRI or a statistic, but it should not be ruled out.

It's something neurologists are doing again (or at least should do as some neurologists advocate): asking the sufferer why he thinks he has Parkinson's. A source of information that in the hands of a specialist can provide valuable data to tailor treatment to each person.

Albert Einstein once wrote on a blackboard: “Not everything that counts can be counted, and not everything that can be counted counts.”
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Old 03-06-2020, 04:30 PM #5
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parkinsons here-now,

Welcome to the forum.

My apologies if I appeared over critical to your post. It was not my intent. My comment was more meaning 2 than meaning 1 below:
'1. expressing adverse or disapproving comments or judgements.
"I was very critical of the previous regime"
2.. expressing or involving an analysis of the merits and faults of a work of literature, music, or art.
"she never won the critical acclaim she sought"'

I look forward to reading your posts in the future.

John
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Old 03-07-2020, 02:09 AM #6
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Quote:
Originally Posted by johnt View Post
Please see my analysis:
John
Thanks John.

This kind of thing happens a lot in epidemiology. I think that the standard package is still SPSS.

My wife got very familiar with it when we were at Oxford. She co-ordinated a big project looking at the effects of different methods of contraception on women's health when we were there.
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