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?
They didn’t.
In mid-March 1919, the third wave of that pandemic arrived in Gunnison. Tired of isolation, no quarantine was set up by the residents, and the county recorded over 140 cases of influenza. Thankfully there were only five deaths.
But I take your point. And I will agree that chance plays a big role in the wider scheme of things in the case of viral pandemics. But in the absense of any other form of defence, social distancing is a good idea in a pandemic.
Social distancing. Source: TimesIndia
Especially for for the sake of individuals who might be considered more vulnerable.
Are people with Parkinson’s more vulnerable to this new coronavirus?
There currently isn’t enough data to answer this question. They might be more vulnerable, but equally they might not be.
We simply don’t know yet.
But really, this is beyond the point. You see, it doesn’t matter at all who is more vulnerable: For the sake of the greater good, everyone should be taking be taking precautions against the SARS-CoV-2 virus.
Period.
I agree. But do we know anything about the virus in terms of Parkinson’s?
Here in the UK, the Association of British Neurologists have provided guidance for people with neurological conditions (including Parkinson’s), suggesting that:
“Milder or moderate forms of many of the commoner neurological disorders, such as Parkinson’s disease, multiple sclerosis, epilepsy are not currently considered to confer increased risk, so long as the breathing and swallowing muscles are functioning well” – as of 22nd March (Click here to read the full guidance)
But in addition to taking precautions against the SARS-CoV-2 virus, the ABN also clearly states that “People with neurological conditions should not stop or alter their medication without prior discussion with their neurology team”.
There is also a statement from the Movement Disorder Society, which believes it is “imperative to emphasize the importance of containment measures for all”. They also recommend that people with Parkinson’s “do not assume they are at extreme risks, which for the time being are uncertain”.
In addition, the Movement Disorder Society “strongly recommend following the standard measures strictly to avoid exposures to the virus. In addition to the basic recommendations to the public, we especially recommend our patient community to consult the websites of World Health Organization (WHO) and Centers for Disease Control and Prevention (CDC) for additional information, and importantly their doctors for specific recommendations depending on individual conditions”.
Given that this is a new virus and humans don’t have immunity (an immune system defense) to it, we must assume that we are all vulnerable to infection.
How do we build immunity?
Individuals become immune to a virus via two ways:
- Get infected by the virus and survive the infection, or
- Develop and administer a vaccine
And until we have developed a vaccine to the virus (which will give us some level of immunity to SARS-CoV-2), we need to be really careful and take precautions to slow down and stop transmission of the virus.
But as a person with Parkinson’s what can I do?
I am not a medical clinician (just a research scientist) and my knowledge of virology is limited, so I am not the right person to be writing this.
Luckily we are surrounded by wonderful people who can provide advice.
And I would recommend that everyone in the Parkinson’s community should watch this video by Dr Soania Mathur – a physician living with Young Onset Parkinson’s Disease:
Soania is a wonderful ambassador for the Parkinson’s community and a tireless advocate – we are extremely lucky to have her. To learn more about Soania’s work and projects, go to her website “UnshakeableMD” (I am a big fan of her book “Shaky Hands, Loving Hands – A Kid’s Guide to Parkinson’s Disease”).
In addition, all of the major Parkinson’s charities have information about COVID-19 and Parkinson’s:
- Parkinson’s UK
- The Michael J Fox Foundation
- The Parkinson’s Foundation
- The Cure Parkinson’s Trust
- Shake it up Australia
But importantly, the World Health Organisation has the following recommendations to prevent infection and to slow transmission of COVID-19:
- Wash your hands regularly with soap and water, or clean them with alcohol-based hand rub.
- Maintain at least 1 metre distance between you and people coughing or sneezing.
- Avoid touching your face.
- Cover your mouth and nose when coughing or sneezing.
- Stay home if you feel unwell.
- Refrain from smoking and other activities that weaken the lungs.
- Practice physical distancing by avoiding unnecessary travel and staying away from large groups of people.
So what does it all mean?
I really marvel at the stories like those of Gunnison County at the top of this post.
Understand that back then they did not have any of the technology that we have today (no phones, television, etc), and yet they had the foresight and collective will to organise themselves to withstand an invisible menace that was tearing across the world (and there is no easy way to say it, but between January 1918 to December 1920, influenza infected an estimated 500 million people worldwide – approximately a quarter of the world’s population at the time – and is believed to have killed 20-50 million).
There was no hope of a vaccine at the time, and having just survived the economic hardships brought on by the Great War, one can only stop for a moment and admire the fortitude of the residence of Gunnison County. There were probably bad times – moments of going ‘cabin crazy’ – but they did what was required for the greater good of their community.
Today, we are far better placed with all of the interconnectedness of our technology, which provides us with opportunities to chat and socialise, to purchase food and other supplies from the comfort of our living room, and to track the incredible global research efforts that have already genetically sequenced this new virus and are clinically testing multiple vaccines for it.
People ask what can we do? There are 6 things:
- Don’t panic
- Be safe
- Practise #1 & #2 on a regular basis
- Devote yourself to your family (we are enjoying home schooling at present. My wife is teacher & I am the very stern head mistress)
- Send all of your praise and positive energy to the medical practitioners who are currently feeling stressed and overwhelmed on the frontline. They are the absolute best of us!
- Understand that this too shall pass
“The true measure of a man is not how he behaves in moments of comfort and convenience but how he stands at times of controversy and challenges.” ―
Time to get personal: As some readers are aware, late last year I was diagnosed with a heart condition which requires me to take (amongst other things) angiotensin converting enzyme (ACE) inhibitor medication every day. Annoying, but no big deal really.
A few weeks after being diagnosed, however, this curious little virus popped up on the main news streams. Like most people I didn’t really pay much attention to it until it started to going viral,… opps, sorry, until the virus started spreading internationally. At that point, I did a little reading (….”Covid-19 agent (also known as SARS-CoV-2) uses the SARS-COV receptor angiotensin converting enzyme (ACE) 2 for entry into target cells” (Reference)). In laymans terms, the virus uses ACE to infect cells.
Ok, I thought. Maybe I’m safe on ACE inhibitors. Maybe, just maybe, they help to block the virus from entering cells?
Further reading, however, suggested that people on ACE inhibitors are more vulnerable to SARS-CoV-2 virus because ACE inhibitors can significantly increase levels of cardiac ACE protein – providing easier access for the virus (Source).
Sucks to be me, I thought (as I kept receiving emails from people asking if Parkinson’s makes them more vulnerable). But I am certainly not alone. There are lots of people taking ACE inhibitors, and like everybody else they will be anxious.
Very recently (20th March), however, there is evidence to suggest the ACE inhibitors might NOT put people at risk (Click here to read more about this).
So now I really don’t know what to think. You see, there simply isn’t enough data to make any solid conclusions on the matter.
All I know for sure is that I’m not panicking.
All of the material on this website is licensed under a
Creative Commons Attribution 4.0 International License
You can do whatever you like with it!
EDITOR’S NOTE: The information provided by the SoPD website is for information and educational purposes only. Under no circumstances should it ever be considered medical or actionable advice. It is provided by research scientists, not medical practitioners. Any actions taken – based on what has been read on the website – are the sole responsibility of the reader. Any actions being contemplated by readers should firstly be discussed with a qualified healthcare professional who is aware of your medical history. While some of the information discussed in this post may cause concern, please speak with your medical physician before attempting any change in an existing treatment regime.
The banner for today’s post was sourced from SDCounty
Thank you, Simon, for your always thoughtful post. Stay well.
LikeLike
Hi Rebecca,
You’re welcome. Dito!
Simon
LikeLike
I wonder if Amantadine that is used by PWP for dyskinesia but originally developed as antiviral drug has any effect on COVID19?
Thanks, Felix
LikeLike
Hi Felix,
Perhaps, but we’ll have to wait and see.There are a large number of in vitro studies being conducted at the moment screening clinically available drugs that could potentially be re-purposed for treating COVID-19. But until production is ramped up to provide a better supply of any identified “useful” drugs, I think it is EXTREMELY irresponsible of politicians and researchers to be making the results available (just look at the idiotic chloroquine situation, where people who actually need the drug (eg lupus sufferers) can’t access it because it is being touted as a ‘miracle’ on pretty weak data thus far). The last thing we want is a run on Amantadine and the PD community to be left with none.
Kind regards,
Simon
LikeLike
What worries me about coronavirus other than the obvious stuff and that it now sucks to be my favorite blogger 😦 is…. the data. I will shortly venture into the lions den of covid 19 (otherwise known as the hospital where I participate in a clinical trial). But I am young, handsome and desperately hopeful for something that will help. Most of my compatriots are older, better looking, perhaps less desperate, and definitely more vulnerable than me based on their age. They may be faced with a difficult decision or may outright be denied entry do to an overwhelmed hospital.
For years to come clinical trial summaries may be interpolating data to account for gaps, rescheduling, people not showing or vulnerable participants sadly passing away. Let’s hope that doesn’t raise too many doubts and slow down the cure too much.
“So Long, and Thanks for All the Fish”
LikeLike
All good wishes in the lion’s den. Thanks for what you’re doing
LikeLiked by 1 person
Be safe Double, and thank you for what you are doing. You have my respect.
The thing that worries me most about the situation is not the virus itself, but the human response (both the panic and the lack of reponse – it appears to be a spectrum of silliness). And curiously, it is fuelled by that amazing interconnected technology I mentioned.
Bizarrely, there will be a few positives to come out of this whole situation, one of which I am hoping to see will be more remote methods of assessment being used in clinical trials of Parkinson’s so that events like this will not disrupt research progress. An example of this is the “Trial of Parkinson’s And Zoledronic Acid” (or TOPAZ) study which is a clinical trial being conducted entirely remotely. The investigators are recruiting 3500 participants with Parkinson’s to assess whether a single infusion of zoledronic acid can prevent bone fractures (https://clinicaltrials.gov/ct2/show/NCT03924414).
Kind regards,
Simon
LikeLike
https://www.youtube.com/watch?v=1vZDVbqRhyM a kind of Khan academy lecture on ace inhibitors and covid-19
LikeLike
Thanks for sharing Keith!
Kind regards,
Simon
LikeLike
Thanks Simon. Enjoy your extra time with the family, don’t be too stern as Headteacher. Stay safe.
LikeLike
Thanks Eirwen. Will do. Dito!
Kind regards,
Simon
LikeLike
Thank you, Simon. We all appreciate your care and your candor. Thank you for sharing your personal circumstances with us. May you and your family stay safe until this global crisis has passed.
LikeLike
Thanks Nadra – much appreciated. And it will pass.
Kind regards,
Simon
LikeLike
Simon, Discussion on BMJ re ACE inhibitors and COVID: https://www.bmj.com/content/368/bmj.m810/rapid-responses
LikeLike
Thanks for sharing Peter – more fuel for the fire (lots of animal data in there unfortunately).
Kind regards,
Simon
LikeLike
Great post, as always. Thank you, Simon. Very stern headmistress – lol.
LikeLike
Thanks Sue – glad you liked the post.
Kind regards,
Simon
LikeLike
Thanks Simon.
There’s a story of a Himalayan mountaineer who finds himself high up on a peak, almost benighted, and with weather conditions deteriorating quickly. He can stay where he is, but he probably will not survive the night. Or, he can jump down an icy slope that leads down to base camp. But, it may contain outcrops of rock which will kill him if he hits them. I suggest that he doesn’t wait for the results of a double blind, placebo control, randomised trial to be published before making his decision.
John
LikeLike
Hi John,
Everything depends on context I guess. I recently wrote to a friend saying that as horrible as this pandemic is, it is an interesting experience to live through. Easy for me to say of course from the comfort of North Hertfordshire. Folks in Northern Italy or New York city might disagree. But I wonder how my views would change if one of my immediate family members (or myself) suddenly came down with the severe version of this disease?
I hope you are well. Be safe.
Kind regards,
Simon
LikeLike