After my diagnosis of “early Stage 1” PD in 2019, I got the ‘aha’ about why my sense of smell had been close to gone for several years prior.
In those early days of overdosing on PD information, I came across a few resources on regaining sense of smell via “olfactory training” and filed them away for reference.
More recently (July 2021), I’m about three months into my high-dose thiamine (HDT) treatment, thanks to HU forum members who are SO generous and detailed with the needed protocol. With that has come a distinct improvement of my sense of smell. It can be fleeting and inconsistent, but it’s unquestionable. I can’t link it to any other variable.
Now that I know the change IS possible, it has me thinking I might be able to juice up the improvement of my sense of smell through “olfactory training.”
QUESTION: Have you done olfactory training, and if so, what was the outcome of your efforts?
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Madame-Mango
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More recently (2021), olfactory training was addressed in a three-minute clip from this MEDCRAM update on Long COVID: youtu.be/vkSI87l8eqc?t=1522
Here’s another clip from the Huberman Lab podcast titled, How Smell, Taste & Pheromone-Like Chemicals Control You: youtu.be/Mwz8JprPeMc?t=3117
By the way, Stanford neuroscientist Andrew Huberman started his weekly podcast earlier this year and it is PACKED with actionable protocols and tools for better brain health and quality of life (not PD-specific). All based on scientific studies which he names. I’m learning a ton and applying some of it, and recommend you check if it's a match for your interests.
This is very interesting and thanks for sharing. I have regained my sense of smell (it does get weaker sometimes) and attribute it to B1. I started taking Mannitol long after I started the B1
I'm encouraged to hear this, and hoping mine improves even more as I move into month four and beyond with the high dose B1/thiamine. Meanwhile, I'm not ready to commit to the extensive daily "olfactory training."
I watched these videos and thought it was interesting. Then I came across a study about Farnesol, a product in essential oils and in perfume. This made me question if the olfactory training was a success by itself or because of the farnesol contained in the essential oils.
Here is part of the article:
A compound that occurs naturally in herbs, berries and other fruits was able to prevent — and even reverse — the effects of Parkinson’s disease in early tests on mice, a new study has found.
The research, published in the journal Science Translational Medicine, found that farnesol, a compound commonly used to flavour food and make perfume, prevents the death of dopamine-producing neurons by deactivating PARIS, a different protein that fosters the gradual progression of Parkinson’s. Without the protective effect of these neurons, movement and cognition becomes impaired, giving rise to the tremor, muscle rigidity, confusion and dementia associated with the progressive disorder.
By blocking PARIS, farnesol opens the door to new interventions that target and alter the ability of the protein to do lasting damage. “Our experiments showed that farnesol both significantly prevented the loss of dopamine neurons and reversed behavioural deficits in mice, indicating its promise as a potential drug treatment to prevent Parkinson’s disease,” said Ted Dawson, director of the Johns Hopkins Institute for Cell Engineering and professor of neurology at the Johns Hopkins University School of Medicine.
Dave Yasvinski
Lemon grass EO has farnesol- I mixed into my husband's hand cream.
Forum members have reported regaining varying degrees of smell and taste from high dose B1 and mannitol with mannitol receiving slightly more votes than B1.
I've seen some comments along those lines, which is another encouraging sign about potential. Interestingly, my own 5-month trial with mannitol in 2019 didn't impact my sense of smell that I could tell. In any case, my system couldn't tolerate it and I ultimately chose to discontinue it.
Each morning, I take a 500 mg tablet. (I experimented with higher doses short-term but 500 mg seems to be the best fit for me right now.)
On Day 16, I could smell the scent of a fresh gardenia flower which I hadn't been able to for years. I'm on Day 85 of high-dose thiamine (B1), and the range of scents I detect has been expanding throughout. Hopeful it will continue and improve.
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Ropinorole restored sense of smell for me.
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