[Stand Tall]

MJFF: Understanding the Link between Smell and PD
An opportunity to play a role in PD research

Who is needed?
People over 60 who do not have Parkinson’s are needed for this study.

https://www.michaeljfox.org/page.html?ppmi-smell

[pegleg]

I was participating in a trial (gneome) at NIH in Bethesda and had to take the "smell test." I forget how many scratch and sniff choices there were, but they all smelled the same to me. (I guess I failed the test!)

Sometimes I smell strong "phantom" smells. Nobody else can smell them, but they arre strong to me.... It is usually a toxic smell, like glue. Does anyonne else have this problem, and what does it mean?

Peggy

[ol'cs]

I remember over 13 years ago, this was a topic on brain talk. The conclusion was that our olfactory bulb of neurons was being "recruited" by some signalling process whereby the cells that were normally devoted to the task of molecular recognition of odour molecules via the nasal passage, were somehow " converted into dopamine producing and or enhancing function, by an unknown mechanism. Peg, I don't have any idea why your particulate case of " anosmia"is specific to the perception of "phantom smells" , all I can say is that what was once a very intense sense for myself has diminished to the point of being muted to almost nothing..

[Stand Tall]

Originally Posted by pegleg

I was participating in a trial (gneome) at NIH in Bethesda and had to take the "smell test." I forget how many scratch and sniff choices there were, but they all smelled the same to me. (I guess I failed the test!)

Sometimes I smell strong "phantom" smells. Nobody else can smell them, but they arre strong to me.... It is usually a toxic smell, like glue. Does anyonne else have this problem, and what does it mean?

Peggy

Peggy, my sense of smell has diminished a bit. I did not notice it at diagnosis, 18 months ago, but now realize that I do not smell things, such as food cooking, as soon as my dear hubster does. I have just recently been aware of a “phantom” smell. It is not particularly offensive or pleasant, it will be there for days and then go away. So odd, all these nuances of the disease. Anyway, my hubster will be taking the smell survey!

Also, I saw your picture in the PDF newsletter. Thank you for all that you’ve done for PD. I was part of the cogane trial and hope to participate in future trials.

Jill

[Tupelo3]

I lost my sense of smell about 3 years prior to diagnosis. I've spoken with many PWP and it appears to be very common about 3 -5 years prior to dx. Clearly is an earlier biomarker. What's interesting is that I've recently seemed to gain back some of the sense. Not sure if it's my imagination or the combo of Azilect and Amantadine that I've been taking.