I have a request to make of readers.
I have been invited – with Parkinson’s advocate AC Woolnough – to conduct a round table at the upcoming 2019 World Parkinson’s Congress meeting in Kyoto. The round table is a discussion involving 10-20 people sitting around a table. Our topic will be how can we better align the efforts of researchers and patients.
And this is where we would like your help. Or at least, we would like your input.
Specifically, we are seeking topics for discussion at the table regarding how we can better join the goals/focus of the community on the research side of things.
In today’s post, we look at what the World Parkinson’s congress is, how the round table topic came about, and what we are currently thinking regarding the structure of our roundtable session.
Yasaka Pagoda and Sannen Zaka Street. Source: JT
It was the capital of Japan for more than one thousand years (from 794 to 1869).
It sits 315 miles southwest of Tokyo and 25 miles east of Osaka.
It was the setting of the world’s first novel in the world (Shikibu Murasaki’s The Tale of Genji).
It has over 1000 Buddhist temples (including the hugely impressive Fushimi-Inari-Taisha), and more than 2,000 temples and shrines collectively.
Fushimi-Inari-Taisha. Source: Medium
It has the oldest restaurant in Kyoto, Japan (called Honke Owariya, which was founded in 1465).
It had its own civil war – referred to as “Onin no Ran” (Onin War) – in the 15th century. The war lasted 11 years (1467-1477) and focused on two families of samurai warriors seeking power in Kyoto.
It is the home of the video game company Nintendo and Nightingale Floors:
It has 1.5 million residents (and 50 million tourists per year).
It consumes more bread and spends more money on coffee than any other city in Japan (I wonder why?).
It has the longest train platform in Japan (at JR Kyoto Station – 564 meters long!).
It is Kyoto.
Kinkaku-ji. Source: AWOL
And in June of this year, the World Parkinson’s congress will be held in this beautiful city.
What is the World Parkinson’s congress?
The world today is mourning the passing of the boxing great, Cassius Clay jr (aka Muhammad Ali). He was many different things to many different people – a boxer, an entertainer, a civil rights activist, an anti-war protestor, a philanthropist, a legend – but he was definitely one of the defining figures of the late 20th century.
During the last third of his life, however, he lived with Parkinson’s disease. You will find a great deal written about Ali and his sporting achievements elsewhere on the web, but today’s post here at SoPD will explore his battle with Parkinson’s.
Many famous figures throughout history have been affected by Parkinson’s disease ( Pope John Paul II, Adolf Hitler, Mao Zedong,…), but very few of them have dealt with their condition in the public eye as much as Muhammad Ali.
Ali was first diagnosed with Parkinson’s disease in 1984.
It was in September of that year – just three years into retirement from boxing – that Ali became concerned about tremors, slowness of movement, slurred speech and unexplained fatigue. He travelled with his entourage to New York, and he was evaluated for a week by Dr Stanley Fahn, M.D., a neurologist at Columbia-Presbyterian Medical Center (New York), before Fahn finally gave Ali his diagnosis.
Dr Stanley Fahn. Source: Youtube
Given his long boxing career, Dr. Fahn suspected that the head trauma inflicted on Ali could be the cause of his condition. In fact, one of the early complaints from Ali was of numbness in his lips and face, which Dr Fahn assumed meant damage to the brain stem – most likely resulting from the boxing.
Neurodegeneration is a serious issue for boxing. Many retired boxers suffer from what is called Dementia pugilistica – a neurodegenerative condition with Alzheimer’s-like dementia. Some estimates suggest that 15-20% of boxers may be affected, with symptoms usually starting 12-16 years after the start of a career in boxing. Some very famous boxers have been diagnosed with this condition, including world champions Floyd Patterson, Joe Louis, Sugar Ray Robinson and boxer/coach Freddie Roach.
In the case of Ali, however, subsequent follow up assessments over many years highlighted the steady progression of his condition, a disease course more indicative of classic Parkinson’s disease. Dr. Fahn admits, however, that – as with all cases of Parkinson’s disease – “the proof is only going to come at his autopsy”.
Ali and a young fan. Source: Pinterest
Being diagnosed at 42 years of age basically placed Ali in the ‘young onset’ group of people with Parkinson’s disease. The average age of diagnosis for Parkinson’s disease is 65 years, but 5-10% of the Parkinson’s community is diagnosed at or below the age of 40. And there are many anecdotal bits of evidence to suggest that Ali was possibly affected by the disease before the age of 40. Ali’s trainer, Angelo Dundee, suspected that Ali’s condition was present during the last few years of his boxing. He remembers Ali gradually slowing down and the newspaper reporters having to lean in to hear what Ali was saying during some of the later interviews. Sports Illustrated senior writer William Nack also noted that “You could see back then that he was just not right”. So although Ali was diagnosed at 42 years of age, the condition may have been affecting him much earlier.
Following the diagnosis, Ali stepped away from the public eye. Parkinson’s affected both of Ali’s most defining characteristics: his moves and his voice. It would have been very understandable for a man as proud as Ali to decide to disappear completely while dealing with his condition. A decade later, however, Ali lit the Olympic caldron at the opening ceremonies of the Atlanta Games (1996), and he was rarely out of the public eye. Attending regular events not only in support of Parkinson’s disease, but also in his role of globetrotting ambassador for peace. Within the Parkinson’s community, Ali lent his name to the ‘Muhammad Ali Parkinson Research Center‘ (Phoenix) and also served as an ambassador for Parkinson’s causes.
In writing this post I have learned a great deal about Ali that I did not know. I have also enjoyed watching and re-watching many of the video interviews of Ali on the internet (Michael Parkinson’s ones are particularly good). Beyond everything the man did and the disease that later came to define him, Ali was an amazing character. It is difficult to think of his equal in the modern world of sports (or beyond).
Truly a sad day.
Inspirational words from the man. Source: Wallpapercave