The smell of Parkinson's


#21

Zatopec, I bet this isn't PD related. 

A dental check/hygienist vist, regular flossing, regular brushing, chewing gum should help.

Also, the dentist will be able to spot if there's a bacterial or fungal cause for it. Is it recent or chronic?

It's definitely treatable anyway :) 


#22

I am fairly new here and watched the programme on BBC , one thing worrying me is that most information stated you die with Parkinson’s not because of it. The lady’s husband passed away 20 yrs after diagnosis.

is this normal , he was in his 40’s , has anyone had the illness for more than 20 yrs. I have just turned 50 and now worried 

I hope I don’t upset anyone asking this 


#23

Hi Outlanderfan 

           Well the honest truth is no one knows how long they will live without Parkinson’s so you’re no worse off now than you were before being diagnosed,  the best advice I can give you is live for now and deal with problems as and when they turn up, you can tie your self up in knots worrying about what might happen but that will only make you miserable.

live life like you have stolen it , love deeply laugh loudly and live fully.

     Live well.  Cc


#24

Hi

I agree with Cheshire cat. Though on a bad day it's not easy. It does get a bit easier with practice but I think its the only way I can realistically deal with PD because although it's altered my life immeasurably I'm determined I won't spend the rest of it letting PD spoil &dominate every thought.There's a lot of new &different things I want to do yet.

Daffy


#25

 

 

Hi Cc - long time since you were on the forum hope you are doing ok, best wishes matey - Sheffy

 

 

 

Hi Outlanderfan - Daffy and Cc are right, don't fret over everything you hear, put on a brave face and make the most of life, it isn't a good thing to have PD but some folks are worse off than us with other diagnoses more debilitating.

Cheer up - Sheila x


#26

Happy Holidays all

I have found purpose far more potent than pills lately/Another thing is fear and the lack of worry or wasted fear.PD is so much easier to handle if fear and anger are minimised and controlled.Ive been able to cut my c/l in half lately

Have a Happy Holiday

john

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


#27

Hi folk

i am one of those that have been without a sense of smell for many years.   (My other half says over 20 years)Have only been diagnosed a year.

Very interesting article, maybe this is the breakthrough they need re diagnosis!

Happy Christmas to one and all.

Jusu

 

 


#28

mg, not only am i conscious of my Parkinson's stare, my tremor and my gait, but now i smell too.  Having pd stinks pardon the pun!


#29

Mine too. I noticed a ‘musty’ scent on my husband before he was diagnosed and now I smell it occasionally on him.


#30

This is really interesting - i was diagnosed with Parkinsons 4 years ago and this musky smell has been following me around for about 5 months when i first noticed it. I say to people can’t you smell a musky smell and they look at me gone out.


#31

hi
I was diagnosed in Jan 2019 and one of the things that got me before the DX was all I could smell was burning, still can, I kept asking my wife is something burning only to receive funny looks,


#32

Hi Martynolan, yes it’s so strange I get odd smells as well and ask my hubby if he can smell whatever it is that drifts through, but he never can. Can’t explain it, it’s usually different smells and not just one! Weird or what!

sheffy


#33

I sometimes get strange smells, motor oil is a weird one I get.


#34

Hi,
I have always been able to smell the musky scent of parkinsons on myself.Before i was diagnosed back in November 2009,i thought it was an odour of cancer.At the time,some of the symptoms i was getting were pointing in that direction.
Having known a couple of people who had cancer,i was aware of the sickly,similar(but worse)scent on them.I assumed at the time,that everybody was aware of this smell.But obviously not.
The parkinsons smell is a variation on this.I can smell it on myself,also this varies in strength.In the same way,i can go shopping and smell the"cancer smell"on a person passing by,and particularly strong if that person is"for example" sat on a bus.
To me,it seems as natural a thing to detect,as the strong smell of of somebody who has not bathed for a while,an unwashed unclean smell which can come hand in hand with BO.
I tried telling my doctor and Neuro about this"being able to smell parkinsons" years ago.They were very dismissive,as usual.
Anyway,there are my thoughts.
Take care
Titan


#35

I believe the loss of smell 10 or 20 years before diagnosis is normal.
It can be addressed with 100% success according to trials reported in the ‘ScienceofParkinsons.com’ website.
You have to take Mannitol (a sugar) for six months.
The many other claims for Mannitol are suspect as it does not cross the blood/brain barrier. But it does not need to, to treat the olfactory (smelling) gland effectively.
What have you got to lose?