Covid-19 UK - PWP category change - WHY? - Cure Parkinson's

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Covid-19 UK - PWP category change - WHY?

Smokeypurple profile image
23 Replies

On Monday recommendation was that PWP have no increased risk of catching CV-19, nor any increased risk if we do catch it - unless we are late stage.

Yesterday advice changed (Govt and subsequently Parkinson's UK) . PWP now come under the Govt category of people who should start serious social distancing and maintain it for a extended period of many weeks.

gov.uk/government/publicati...

I understand that we may all be under lock down within the next few days but my question is this:

Are we being put in this category because infection is known to exacerbate PD symptoms and create problems with meds and care or...

Is there something about the disease itself which makes CV-19 more dangerous for us?

I am 50 - fit and active, not on meds yet, mother of 2 teens still at school. Husband is at work for now. Until yesterday I felt that I had the same risks as him, and significantly less than my 83 year old mum. Now I'm not sure.

Glad you're there!

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Smokeypurple profile image
Smokeypurple
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23 Replies
buzbyc profile image
buzbyc

Hi Smokey,

I know it is a bit confusing!

I think you're right in that infection will most likely exacerbate symptoms. The other point to mention is that most people with Parkinsons are much older and may have other pre-existing conditions, so for lots of reasons may be more likely to suffer problems if they do catch covid.

What I'm holding on to is that at 47 I'm much younger than most PWP and try to eat pretty well and do some exercise. A lot of the western population are classified as obese and don't exercise, and we actually may be in better shape to resist infections.

Having said that - so many unknowns at the moment

Nick

beauxreflets profile image
beauxreflets

PD affects the mechanical reflexes within the immune system making it harder for us to fight things like Flu, Colds & other infections without the aid of Antibiotics. So the high risk is in having a compromised immune system in the first place, rather than the coming in contact numbers.

GymBag profile image
GymBag

I suspect that it has been realized that the death certificate of most PWP lists the cause of death as " complications from Pneumonia " . Pneumonia being the prime concern in the treatment of COVID-19. We are not sitting pretty. If it gets bad then Hospital triage may take on a new meaning . Old with PD and other prior conditions, may not result in an instant ticket into the hospital where resperators are already in short supply.

parkie13 profile image
parkie13 in reply to GymBag

That is what is happening in Italy. You're all, you might as well forget it.

Gioc profile image
Gioc in reply to parkie13

not yet , but it may happen!

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but even in intensive care with all treatments, the older cases and with other pathologies can die.

MarionP profile image
MarionP in reply to Gioc

Happens now in Italy. Govt. policy openly prioritizes those with a useful working\contributing life prospect over aged. Openly. Only Italy could manage to make the French look good.

Gioc profile image
Gioc in reply to MarionP

No.

MarionP profile image
MarionP in reply to Gioc

nytimes.com/2020/03/19/opin...

Don't forget to read the comments.

Since you're in EU, if you get this sars-cov-2 and have lung issues, I urge you to get your doctor to prescribe one of the three meds we've been discussing, early...because you may be triaged out for a ventilator bed, unless you are in a younger age or non-disabled.

Gioc profile image
Gioc in reply to MarionP

No! in in Italy no.

This is not the criterion.

Article 32 of the Italian Constitution.

The Republic protects health as a fundamental right of the individual and an interest of the community, and guarantees free care to the poor.

Nobody can be forced to a specific health treatment except by law. Under no circumstances can the law violate the limits imposed by respect for the human person.

MarionP profile image
MarionP in reply to Gioc

It's about rationing and denying treatment from, not forcing into, treatment, via policy selection based on a prejudice, with a high chance of imminent death for the older and less-able (less valuable) persons so as to preserve the younger, healthier persons' social and economic net earning potential. What would you call it? I call it Logan's Run, they had good paper laws and constitution too...as people reached the target age, all went to a wonderful reward. But we'll see. We'll see what people do. Maybe those with enough money or property could buy their way in, that works in most places. Perhaps in EU hopefully one might relocate at the critical time to where they have a different policy. Contact your media and say it's in the NY Times and must be corrected or countered. Bona fortuna. Get those right drugs so hospital is not needed, especially chloroquine and the med combo Kaletra, the protease inhibitor that has been approved since 2006, this message is for everyone. Perhaps it is not true, but how many ventillators does Italy have (unoccupied, available for use)?

Gioc profile image
Gioc in reply to MarionP

Not in Italy

You don't know the situation. At the moment there is no shortage of ventilators but of doctors and anesthetists who unfortunately tend to get sick too. Do you know someone who wants to come? Bad wages, impossible hours, high risk to get sick, but the project is great: stop the pandemic and save lives and the world from collapse. Technical skills and sense of duty as the only requirements.

They are our heroes.🙏

Jaguarorbust profile image
Jaguarorbust

I’m in your situation almost exactly. On Tues 17th Mar coincidentally I had a routine appointment with the Bucks NHS Parkinson’s nurse who is excellent. She told me there was no increased risk and that Parkinson’s does not compromise your immune system. The increased risk comes from other physical attributes such as fitness, obesity, smoking and lung conditions.

The PUK website does talk about an increased risk parkinsons.org.uk/news/unde... and the onward link to NHS discusses pneumonia as a cause of death for PwP in normal circumstances. It is possible to get vaccinated against certain types of pneumonia, but I don’t know the details.

Personally, I’m not going to worry and suspect the guidance is aimed more at those less fit and active.

CASEY9534 profile image
CASEY9534 in reply to Jaguarorbust

Vaccination is for bacterial pneumonia

Jaguarorbust profile image
Jaguarorbust in reply to CASEY9534

Thanks Casey!

Smokeypurple profile image
Smokeypurple

Thank you all - really appreciate this community you're so generous with time and knowledge.

jeffmayer profile image
jeffmayer

I would be inclined to agree I am pretty fit and cycle120 miles per week heart rate is 54 blood pressure is ok so I consider myself fitter than most so in your case I think you are better equipped than most to cope in my opinion it will hit other conditions harder we all just need to be careful

GymBag profile image
GymBag in reply to jeffmayer

Yea, your probably correct , probably just a bunch of weak fat sissy boys that are dying in Italy. I would not worry about it, much. A person's immune system is connected to his physical strength right ?

jeffmayer profile image
jeffmayer in reply to GymBag

I think fitness is definitely a bonus

Gioc profile image
Gioc in reply to jeffmayer

In Italia patient 1 had just run two half marathons before ending up intubated at the risk of dying (and probably infected accidentally hundreds of people). There are many variables to consider such as the amount of virus taken in, but you should also avoid bringing the virus home to relatives.

The virus runs fast and we are always late with it.

ansa.it/english/news/genera...

Smokeypurple profile image
Smokeypurple

This seems like a good talk from the Parkinson's Foundation

parkinson.org/blog/tips/Cor...

Only yesterday so up to date.

They don't think age is important.

Also mention of possible involvement of IL-6 mentioned on another thread on this forum.

PDGal4 profile image
PDGal4 in reply to Smokeypurple

I watched this live yesterday. They said PWP are not compromised immunity-wise, but are considered at risk because of weak swallowing muscles and gag reflexes. Aspiration pneumonia is always an issue, along with falls and fractures something we want to prevent. Advice was to stay inside as much as possible.

MarionP profile image
MarionP in reply to Smokeypurple

Trump surprised everybody parlaying chloroquine and that gilead retrovir. today. Eventually for U.S., anyway. Knocks it out. The rna can't make protein thus can't replicate. Rescuma picked up on chloroquine first, in The Guardian. Couldn't get any of the big cable news networks here to pick it up, nor ny times nor wash. post. Now a week later we hear it today from Trump. Everywhere else it's approved. Long large clinical trials first for States.

KuriousKaty profile image
KuriousKaty

Since Parkinson’s varies so much person to person I wonder if it’s possible to use it as a broad category of “risk”. My partner is 63, diagnosed 10 years ago and in really good shape. Exercises daily with manageable symptoms and a great outlook. As for weakened immunity, the joke is that he’s the healthiest man alive, barring Parkinson’s. Even when the whole fam has a cold, he never catches it... so who knows? We have found daily meditation to be a tremendous help to add some much-needed peace of mind. All my best to all of you!

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