Help. Last year my wife noticed my body smell had changed to an unpleasant musty odour. Since then I tried everything through the GP and the only conclusion is that she’s a super smeller as in Joy Milne, and I’m in a pre-Parkinson’s state. This has been pretty much agreed with my GP and a neurologist as there appears to be not much else it can be. I’ve had a series of blood tests to rule out anything else, we’ve discovered the smell is sebum based and by showering twice a day it’s kept under control (at one stage we talked about moving house so we could have separate bedrooms!) We’ve looked at the Japanese discovered ‘old person’ smell and persimmon soap, and I’ve tried to fool my wife on a number of occasions, by not showering or not using soap and she’s picked it up every time. I’ve also triad to contact the researchers who did the Joy Milne research at Manchester University but have now seemed to have reached the end of the road. GP and neurologist have said the NHS have nothing more to offer so I feel a bit stuck. I’d like to know more obviously, and would be happy to get involved with any research as I know so many places say they’re looking at ways of finding early diagnosis and this may be one. However I now keep coming up with brick-walls so looking for other ideas if anyone has anything to offer?
I am also interested to see if anyone has a solution to this problem. When in car, my wife has to open a window to let air in because of the pong. My daughter also objects to my smell. I consider myself a clean person, but I cannot get rid of, as you say, this musty moth-ball like smell, that I cannot smell myself. It has trashed my self-esteem.
I noticed an odour in my bedroom when entering then I got used to it. This was before I was diagnosed with PD some 10 years ago. My wife notices the odour and I have failed in my efforts to get rid of it including showering twice a day.
I had an op under general anaesthetic in Jun 2017, and a slight smell seemed to linger in my nostrils for a few months, that I put down to the normal hospital smell or the anaesthetic.
Then a year ago I had another, more major op and the smell has been lingering in my nostrils since; my wife hasn’t noticed anything.
But now I know that my PD symptoms became noticeable around Apr/May 2017 I wonder if that’s connected?
I’m feeling increasingly frustrated as the more information I search for on Parkinson’s body smell and it being noticeable by some people before the disease kicks in or gets diagnosed the more brick walls I find. it seems this is being picked up by a number of people in the Parkinson’s community but research, which started with the Joy Milne case and Manchester University now seems to have come to a halt.
For anyone wishing to view there is a documentary online and a link here to the basic news from the BBC; https://www.bbc.co.uk/news/uk-scotland-47627179
I ask once again, where is the ongoing research?
Hi I posted the other day re body smell. My husband has it it is a suffocating cloying smell. I don’t think anyone else can smell it. I make sure his scarf, gloves, hat, fleeces are regularly washed ad well as towels bedding etc. We recently put an ambipur smelly in his room on a timer so the room is pleasant smellung. He gets distressed about it but so far there appears to be no answers I keep assuring him that no one else can detect it.
If I use the treadmill for a good session, 20 mins+. I get a really musty smell, not your usual sweaty smell, more a putrified musty smell, it seams to come from my chest, lower neck area.
Oh dear, yes, that smell is overpowering. This last week my hubby has been struggling with his PD symptoms and the smell has returned full force. I have to open all windows.
I, and my family have also suffered with this issue, in fact I had it for a year before my diagnosis and my doctor or my wife could not smell anything. I do now wash my nostrils and it keeps it at bay, also I use a liquid natural body wash that does the trick for me so far and I now get plenty of hugs from my seven year old and my wife. I will see how long it lasts.
Thanks Ter, what brand was the shower gel? My father suffers from the same thing and is very self conscious of it but luckily I am the only one in the family that can smell it.
Problem with Parkinsons is its a "catch all "diagnosis-and can give rise to a wiide range of symptoms. It’s all too easy to ascribe certain unusual symptoms to Parkinson’s whereas symptoms may arise from other medical conditions.
best to get a general health check and blood tests to screen out other possible causes!
So glad I found this article. My husband didn’t believe me re the odour. But we now have a diffuser in his bedroom I have convinced him to use the cologne I got him. But like you mentioned when he is stressed it really appears.
When it’s there, I can smell it myself. I can be OK for weeks, then have several days of smell. It might be stress related (per previous post).
Surely we can identify which part of the body it comes from??? Or is it all over? I see a suggestions of neck and chest (not armpits). When bad, it can be as soon as a couple of hours after a shower and wearing a clean top. If X can mark the spot, I’ll blast it with extra deoderant
I have identified the source of the smell (at least in me). It is coming from rhe the back of my head (crown to nape of neck) probably from hair folicles. When it’s there, leaning back on my leather recliner will leave the oily substance. [I wash my hair every day and do not use any gells, etc.]
I’d be interested to know if others find similar.
My sister just told me ive been smelling over the last few months. I cant shower more than I do. And now yah. I’m not sure.
Agree. My husband is a Parkie, and sometimes the small can be quite strong, though I haven’t identified when/ what makes it worse, but it definitely seems to come from the back of his neck; I notice it on coats/ fleeces that aren’t washed as often as shirts. Tough topic to discuss with a loved one…
Has anyone noticed if the smell increases as the PD advances or if it does when stress level is higher?
My husband has had the sebum odour for over a year now and it appears to be getting worse although his other Parkinson’s symptoms are stable. I do feel that tiredness or stress makes it worse but exercise can help. While we all know we have to deal with it I have hit a brick wall as far as managing the practical side of this. As others have said it is so difficult to stop the odour being transferred to cushions, car seats, pillows etc. Despite washing at hot temperatures it is so difficult to get the odour out of clothes. I have also tried using baking soda in my wash to no avail. Does anyone have any tips? Does anyone find if it is worse with or without medication?
Hello Ann,
We just wanted to take a moment to welcome to our forum community. This is a sensitive subject and while it does not affect all people with Parkinson’s it is an occasional topic of discussion, as you will see as you read through this thread. If you have questions that our community can not provide the answers to, do try reaching out to our free and confidential helpline on 0808 800 0303 and one of our advisors will be happy to listen and assist however they can.
We hope this helps, and with our warmest welcome,
Jason
Forum Moderator