Tagged: MDS

The COVID-19 post

 

I have been extremely reluctant to write a post on this topic because the nature of it is well outside of my circle of confidence. But many concerned readers have emailed me about the current SARS-CoV-2/Covid-19 crisis asking questions.

Specifically, they want to know if people with Parkinson’s are more at risk and what can be done.

My answers to these emails has been very simple: There simply isn’t enough data to know at present if people with Parkinson’s are more vulnerable, but there is ample historic evidence to suggest that social distancing is a very good course of action.

In today’s short post, we discuss the SARS-CoV-2/Covid-19 situation.

 


Crystal Mill, Gunnison County, Colorado. Source: Pinterest

In 1918, as the young men of America returned from the Great War in Europe, they brought with them a terrible souvenir: Influenzia (or “The Spanish flu”).

By early October of that year, the virus had made its way across the midwest and it had reached the great state of Colorado. And on the 8th October – sensing the invisible enemy closing in – the officials in the sparsely populated mountainous Gunnison County (Colorado – pop. 5,600), isolated themselves off from the rest of the world. They immediately closed all of their schools, and insisted visitors undergo a five-day quarantine before being allowed to walk their streets.

Gunnison 1918. Source: 9News

Barricades with lanterns went up on the major highways. They carried warning signs instructing drivers to pass straight through the county without stopping. Absolutely no interaction between these visitors and the local residents was allowed. And anyone getting off a train at the main station was immediately put into mandatory quarantine.

The county maintained the quarantine order until the morning of February 5th, 1919 (4 months). The economy suffered, but the community survived – during that period of isolation, only two people in the entire county got the flu (one of whom passed away – Source).

The point of this historical tale is that social distancing is a very good defence in a pandemic.

The goal is to simply deprive a virus of any opportunity to move from person-to-person.

Perhaps the residents of “sparsely populated” Gunnison county just got lucky?

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We need to talk about the UPDRS

 

“The measure of who we are is what we do with what we have” – Vince Lombardi

The measuring of Parkinson’s is complicated. There is such enormous variability between individual cases that the task of assessing people is very difficult.

The primary method that is used in clinics around the world is the Unified Parkinson’s Disease Rating Scale (or UPDRS). It is by no means perfect, and recently (in the wake of several unsuccessful clinical trials) there has been heated debate as to whether it is really up to the task.

Does it accurately reflect the condition? Does it really capture the lived experience? Can it pick up subtle changes associated with potentially disease modifying therapies in clinical trials? Or is it simply a “we’ve always done it this way” kind of tool?

In today’s post, we will look at what the UPDRS is, discuss some of the criticisms associated with it, and consider what solutions to those issues could look like.

 


Source: Wired

This is Andy Grove and his story is rather remarkable.

Born in 1936 to a Jewish family in Budapest, he managed to survive the Nazis, and then fleed Hungary when Soviet tanks started rolling in. Arriving in the US with absolutely nothing, he taught himself English, before going to City College of New York and later the University of California (Berkeley) where he received a PhD in chemical engineering.

And that was just the start of his amazing tale.

After completing his PhD (and publishing a textbook on semiconductors), Grove joined the seminal Silicon Valley company – Fairchild Semiconductor – in 1963. He worked his way up from researcher to assistant director of development, before becoming the first person that Robert Noyce and Gordon Moore (of Moore’s Law fame) hired after they departed Fairchild to start their own little company in 1968.

The name of that company was Intel.

Source: Wikipedia

Grove also worked his way up the ladder at Intel – from director of engineering to CEO – and he is credited with transforming the company from a struggling memory chip maker into the processor powerhouse it is today. He was Time’s ‘Man of the Year’ in 1997 and he was a widely revered figure in Silicon valley.

Source: Time

But the path to success was not easy.

Having survived prostate cancer in 1995, Grove was diagnosed with Parkinson’s in 2000. Viewing the situation as a problem solving exercise, he poured tens of millions of his own money into researching Parkinson’s.

Andy & Michael J Fox. Source: MJFF

But coming from the world of ‘Moore’s Law’, Grove became frustrated by a.) the slow speed of progress in the world of biomedical research and b.) the tools used to assess it.

In particular, he disliked the UPDRS, which he referred to as a “piece of crap” (Source – you should read the linked article).

What is the UPDRS?

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