Parkinsons odour: My Wife is being treated... - Cure Parkinson's

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Parkinsons odour

Allypally49 profile image
30 Replies

My Wife is being treated for Parkinsons since Jan 2019.Previous to that, there were times when I could smell an odour from her even after getting ready for a night out.

I've no idea if others could smell it but after receiving the co-careldopa tablets, the smell never occurred.

I mentioned the odour smell and me detecting it pre- Parkinsons but no comment was made by the neurologist.

Recently I've detected the smell again.

What advice can anyone give?

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Allypally49
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30 Replies
CaseyInsights profile image
CaseyInsights

Baking soda helps. Mix it in with soap for bath and/or shower. My spouse use the Arm & Hammer brand 🌺

Hikoi profile image
Hikoi

The woman who can smell Parkinsons. There is alot on line about her. She lives inn Scotland.

theguardian.com/society/202...

youtu.be/CUUmElICrhw

You know about this woman? You could perhaps ask her.

LAJ12345 profile image
LAJ12345

I can smell it. And diabetes which is different. It’s the smell of old people homes.

RoyalBlue2 profile image
RoyalBlue2 in reply to LAJ12345

Hello. My PwP also has an odor at times. Has both diabetes and Parkinsons. Which has the old people's houses smell? If not parkinson's then would you please describe the qualities of the parkinsons odor. Thanks! I didn't know that diabetes also had an associated odor. Fun!!

Allypally49 profile image
Allypally49 in reply to RoyalBlue2

WWP no diabetes so wouldn't know the diabetes smell

RoyalBlue2 profile image
RoyalBlue2 in reply to Allypally49

Yes. Got it! :-) I was replying to LAH12345. I'm new at this so I may have done it wrong. Sorry!

LAJ12345 profile image
LAJ12345 in reply to RoyalBlue2

Diabetes smells a bit like acetone. This is due to their malfunctioning of their sugar processing.

Parkinson’s is the ‘old persons home ‘ ( I mean the rest homes where lots of elderly live) odour. This smells a bit like musty socks and wet towels. Hard to describe.

Even when his clothes are washed and put away the smell seems to be in the drawer when I open it and clothes that haven’t been worn for a while seem to smell of it again.

I think it’s due to faulty fatty acid processing. When he was first diagnosed he had very oily skin, acne and rosacea. With changed diet, multinutrients, pantethine and berberine over a year or so the oily skin seems to be solved and that helped the smell too but and I don’t smell him usually anymore but the clothes drawers still can’t shake off the smell.

LAJ12345 profile image
LAJ12345 in reply to LAJ12345

Ps I could smell it when I first met him aged 39 , 19 years before diagnosis. I always wondered why he had a different odour when he sweated than most men.

RoyalBlue2 profile image
RoyalBlue2 in reply to LAJ12345

Thanks for clarifying. Yes, we have the issue with the clothes too. I always use an extra rinse and sometimes all fabric bleach and that helps. Maybe you need to rewash all the clothes in the drawer. His skin is a little oily and the seborreah is an issue, but that's not where I smell it. It's more on his shoulders and upper back and chest. I will look into those nutrients you mentioned. Thanks! It's nice to know we aren't alone.

LAJ12345 profile image
LAJ12345 in reply to RoyalBlue2

Yes, I did take them all out and rewash and soak in nappy san but it comes back. I bleached the actual drawer too.

The problem is synthetic sports tops you can’t wash on hot wash and so it’s hard to get every oily trace out of them.

Or maybe he still has traces of the smell on him so anyoil that isn’t removed from his clothes gets stronger. I don’t usually smell it on him now but maybe I am desensitised.

Lorraine33 profile image
Lorraine33

my hwp has a party odour very occasionally. Usually I smell it when we are in bed and his symptoms have been quite bad that day. It passes and doesn’t happen again for months.

Yes my PWP calls it the old man smell and he hates it! He seems to only have it when things are not going right - or as he says the brain and body are arguing with each other.

Delhitinkerer profile image
Delhitinkerer

Can you describe it?

Allypally49 profile image
Allypally49 in reply to Delhitinkerer

It's not the normal sweat it's more potent.

Delhitinkerer profile image
Delhitinkerer in reply to Allypally49

Is it onion/ garlicky?

shaken-not-stirred profile image
shaken-not-stirred in reply to Delhitinkerer

No it is sort of musty.

Smokeypurple profile image
Smokeypurple

Perhaps nonenal soap would be good? walmart.com/c/kp/nonenal

Allypally49 profile image
Allypally49 in reply to Smokeypurple

I'm in the uk, will have to do a search for it

Smokeypurple profile image
Smokeypurple

Amazon UK or Etsy have some if shopping online.

kaypeeoh profile image
kaypeeoh

I've wondered about this for a long while. Is it seborrhea? Skin oils accumulate on the skin and degrade, kinda-sorta like "rotting". I don't think I have this odor but I can't be sure. So I shower and use dandruff shampoo from head-to-foot. Plus I use a kitchen scrubber sponge to lift dead skin cells while showering.

Allypally49 profile image
Allypally49 in reply to kaypeeoh

But why pre parkinsons diagnostic then disappeared after co-careldopa to appear 5 years later?

RoyalBlue2 profile image
RoyalBlue2 in reply to Allypally49

I read somewhere that body odors for anyone can be related to the gut bacteria.

Allypally49 profile image
Allypally49 in reply to RoyalBlue2

I'd say most thing relate to the gut

Boscoejean profile image
Boscoejean in reply to RoyalBlue2

I think that is possible because the smell went away after treatment for SIBO and GERD

Dabaa profile image
Dabaa in reply to Boscoejean

What treats those conditions, please? Thank you.

Boscoejean profile image
Boscoejean in reply to Dabaa

The GI doctor used two medications but the first one did not work but the one that seemed to work was the metronidazole. She also had him use a probiotic Bifidobacterium infantis 35624. The naturopath said that the probiotic rhamnosusGG is helpful for SIBO. The good news is that his digestive symptoms are pretty much gone and GERD seems to be gone but he also takes a natural protocol at night to help with GERD that fared better than the prescription medication in clinical trials. researchgate.net/publicatio...

He also takes dysbiocide. He takes digestive enzymes with each meal

LAJ12345 profile image
LAJ12345 in reply to kaypeeoh

I think it is malfunctioning of the fatty acid processing, like the diabetes smell is the malfunctioning of the glucose processing.

Trig27 profile image
Trig27

you probably can smell it. dogs have been trained to diagnose PD very effectively.

Salted profile image
Salted

On June 16, the New York Times magazine had a long profile article about Joy Milne. From that article:

"Of the more than 200 molecular fragments the machine distinguished, Joy reported a strong Parkinson’s-like scent in the presence of just three: eicosane and octadecanal, which are known to have weak waxy or oily smells, and hippuric acid, which is not typically reported to have any smell at all. Each of the chemicals was found in notably higher concentrations in the sebum of Parkinson’s patients than in controls, the researchers wrote in their 2019 report. This was the source of the Parkinson’s scent.

But why those particular chemicals were arriving on the skin, and what exactly they represented, remained uncertain. In a 2021 metabolomic analysis of Parkinsonian sebum, published in Nature Communications, Barran and her colleagues found evidence of changes in two important human metabolic pathways, the first implicating mitochondria, the second additionally implicating the organelles known as lysosomes. The pathways in question exist in cells throughout the body. But they are particularly active in our brains, where disruptions to mitochondrial and lysosomal function are known features of Parkinson’s disease. The byproducts of these disrupted pathways — the molecules Joy detected — were, it seemed, being somehow transported to the surface of the body. With her nose, the researchers came to suspect, Joy was smelling the very death of the brain."

Hikoi profile image
Hikoi in reply to Salted

Interesting.

See my video posting above. It is the Joy Milne you write about.

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