Covid to Parkinsons

[healthyheart7]

As someone with Parkinsons for 11 years, preceded a few years by loss of smell. The question that I have is:

Are people that are recovered from Covid-19, with a persistent loss of smell.

A re they at an increased risk of Parkinsons?

[kevowpd]

It's not possible to know yet as insufficient time has passed to do a reliable study. Give it 15 years.

If you are predisposed to developing PD, though, I would think C19 is best avoided.

[healthyheart7 in reply to kevowpd]

Fully vaccinated, avoid crowds, and of course always wear a mask when out.

But most important: lucky

[park_bear]

Some case reports:

jns-journal.com/action/show...

translational-medicine.biom...

thelancet.com/journals/lane...

[blazyb]

it is a good question and one my doctors have been trying to answer - my story was set out in the lancet - see the link in my blog. I want to reiterate that the doctors have NOT found a link and it could and may well be a total coincidence - statistically it is possible. There is no link that my doctors have found but on the other hand there was no genetic disposition (they tested it twice) and it appears to have come on very quickly (no signs before Covid). I wouldn't be worried about it.....it seems there are so so so few people in my position. As said in other replies - stay safe and don't let it worry you. Link - fightingparkinsonss.com/202...

[Zella23 in reply to blazyb]

I was really interested to read your story, thank you for posting it. Whether or not there was a link from Covid it’s difficult to prove as you say. You seem to have a great team of help around you which I think is vital to help you stay and feel well. When one’s body is under stress either from work or something else it definitely contributes to a lowering of resistance to ailments. My husband was older than you when dx but had suffered with moderately high BP, overweight, bad back semi retired but kept taking on additional projects from work. I always feel the BP pills he was given and changed a couple of times due to side effects were the start of symptoms of PD. Very minor at first but noticeable to me. 4 years after this he was dx with PD.

Maybe there is a specific ‘trigger’ in the body that starts off PD that varies from person to person. I have had this discussion with some of the medical professionals and some have said it could be from BP meds or coincidence. My husband had rarely taken any medication throughout his life so the onset of his early symptoms was about 3 months after the BP meds.

Maybe in your case it was Covid although these things are difficult or impossible to prove.

He and I are now doing the Rapsodi research which is trying to establish early indicators of PD, genetic possibilities as well as other similar conditions. It’s very interesting and may eventually give us answers to all these questions.

[kevowpd in reply to Zella23]

Its generally accepted that the disease process starts a decade or more before motor symptoms appear. Of course various things might speed up or slow down that process, but things that occurred at or around the time symptoms started to appear can only really possibly be responsible for the last few percent of the damage done (and they mightn't be responsible for that, either).

[blazyb in reply to kevowpd]

unfortunately i am an accountant and have no medical background .... but one of the doctors i trust said the following: You for sure have what looks like classic PD and I would use your DatScan in a medical text book but i can't explain how it seems the condition progressed so so quickly in a matter of months - it is not normal". that's as much as i know but it doesn't really matter as it is what it is and i have to get on with living thanks for the response

[kevowpd in reply to blazyb]

There's a broad spectrum of pretty much everything. Let's not forget that some people are dx at 80 and some at 30. C19 may not have helped you but as you say it doesn't really matter.

What I really like to help people avoid is blaming particular decisions they made, like "oh if we hadn't used that particular blood pressure med, maybe you wouldn't have PD".

[blazyb in reply to kevowpd]

you are totally right in that respect - i have no reason why i have it - it is what it is. most people in life have their ups and downs, their high points and tragedies. this is mine and let's keep faith and get on with it. i know it is easier said than done and i can't pretend to always feel like this

[Zella23 in reply to kevowpd]

Our Neuro said he’d probably had it for about 6 years before dx but who knows.

[blazyb in reply to Zella23]

"who knows" exactly

[blazyb in reply to Zella23]

thank you for your reply and hope for answers soon!!!! Hope he stays well for a long long long time

[Zella23 in reply to blazyb]

Thank you, and you too!

[healthyheart7 in reply to Zella23]

Clarification: I never had Covid

Other possible triggers: Aspertane, Roundup, stress, etc

[jimcaster in reply to blazyb]

blazyb, I read your two blog posts and the Lancet article and am really impressed by your attitude, your vulnerability, and your intelligence. You express yourself very well.

As you know, PD symptoms and progression vary considerably from person to person, yet we all tend to have some common experiences. I also had particular difficulty with handwriting and a fear of levodopa. Of course, I still worry about the long term effects of levodopa, but it really helps manage my symptoms, especially handwriting. I am now approximately four years post diagnosis and am happy to report that this isn't nearly as bad as I originally feared. I'm a realist and I am fully aware of the long term prognosis, but I think maintaining a positive attitude and exercising regularly will sustain both of us until a major breakthrough is realized. Take care! You will be fine for a very long time. 😊

[blazyb in reply to jimcaster]

Thank you so much for the response… really helps. Hope all is well for a very long time

[beehive23]

yes to question 1..... my coronaversary nov 2 2020...covid incresed all pd symptoms 15-30% for me...hang tough

[bookish]

Interesting question. Tom O'Bryan was someone I read/watched talking about autoimmunity in general several years ago and loss of sense of smell was one of his early indicators for loss of brain function. He wasn't specific about which autoimmune/s one might develop, just that it could be a sign of a possible weakness. Doesn't have to be genetic - lifestyle and other triggers can be just as problematic in combination. And other viruses have long been considered as triggers for autoimmunity and immune-mediated illness. Like EBV for example. So it could be that Covid is proving to be a 'trigger' for some who were already predisposed to autoimmunity, or exacerbating a pre-existing but undiagnosed early stage condition. Some of course do recover their sense of smell, even with long Covid, and you would hope that the 'autoimmune' type, anti-inflammatory diet along with trying to deal with any residual virus and get vitamins and minerals optimal as fast as possible would give people the best chance of recovery or at least slow down the progression. (I don't have PD but other autoimmunes, and that is what I have been trying). So I doubt that they are specifically at risk of PD, but at risk, yes possibly, if they ignore the little flashing sign. Best wishes

[Despe]

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